Greg's Alien

Way Down Deep

2012-02-14T18:14:00.000-05:00

Not really all that far does one have to go to extract bone marrow. Probably less than an inch.

Last Tuesday was the scheduled bone marrow biopsy for this round of follow up. If I calculate correctly, I have had 7 of them since November 2008 and only have 3 more to go between now and August 2014 (another one in 6 months and then only one in 2013 and one in 2014) when I will be considered officially cured of the alien invasion.

I was asked on Sunday if I had heard back from the results of the bone marrow biopsy. I replied that I hadn't and I normally don't worry about it unless the doctor's office calls me. If a week or two passes without hearing from them, all is well.

Remind yourself to keep breathing as you read the next part.

Monday, the caller ID on my phone indicated a call from the doctor's office. Before I could say anything other than "Hello," the medical assistant to my doctor said, "I'm calling you with the following message from your doctor. You have beautiful bone marrow." Immediately after that, the verbal hijinks began.

That's how it works for me. If they had paused and said, "The doctor would like to meet with you, can we schedule an appointment," there would have been anxiety.

However, being the pros that they are, they know how to make and deliver those calls before anxiety even has an opportunity to peek in the door.

First down at 10 at midfield....

I'll Have Another Round

2012-02-09T08:12:00.000-05:00

This round of scans, bone marrow biopsy, doctor follow up - DONE!

Nothing to report other than another 6 months of being cancer free. What is left is the next round in 6 months and then it goes to yearly testing/follow ups after that. Only 3 more rounds left in the next two and a half years.

It's funny though, I can tell when people ask me, "How are you doing?", that maybe their real question is, "Has the cancer returned?" I had a couple of coughing spells in the last few months and a friend said to me, "I've noticed you have been coughing alot lately..." Given our familiarity, I replied with a snarky remark.

I was telling a retired nurse friend of mine about how I sense everybody still seems concerned about my health when I think they needn't be. She replied, "Let your friends be concerned for you and care about you."

I get it now. Nurses are so smart!

Over Easy

2012-01-19T19:28:00.001-05:00

In case you want to go to the store and purchase a couple of bottles of what I had for breakfast today, I have included a picture of them as they appeared in my refrigerator this morning (yes it is kind of empty right now - only because I don't "stock" my refrigerator unless company is coming) so you would know what to ask for when you just have to have yourself a CT scan prep smoothie. I've gotten so I tolerate them pretty well. I started drinking them at 6AM and finished by 6:30. As you are not allowed to have anything to eat after 4:30AM (which I hadn't consumed anything since the night before), they put a hungry stomach to rest for awhile.

My main anxiety was about the IV stick (instead of having my port accessed as in the past). By now, I'm used to the whole needle thing, but due to some IV needle placement issues in the early days of all this, I'm not wild about the whole concept of an IV stick. However.....

The medical technician that did the stick today has to be one of the best. Small pinch....all done. That anxiety is now discarded. And, since I only have to do 3 more between now and August 2014, I can deal with it.

Next up, a follow up visit with the doctor next Thursday. Not so much anxiety for me between now and then. Here is how it works for me.....If her office calls between now and then and wants to set up another sort of test/scan, we have things to think about. If not, it's a "How are you. I'm fine. How are you? See you in 6 months and 'Oh yes, we need to schedule your next bone marrow biopsy'.." kind of meeting and we part ways until next time.

I feel good. I look good (it's objective, I know).

Good enough.

Long Time Coming

2011-12-31T08:43:00.000-05:00

I intended to post this picture several weeks ago, i.e. in mid-November. The reason it wasn't posted is that I seem to have misplaced the cable I use to transfer pictures from my camera to my computer. Could it be that there is still some chemo-brain lingering, or is it old age? Doesn't really matter.

I took this picture at Dutch Gap near Richmond VA on November 12. Earlier in the year, I took a kayak tour of this area and when this picture was taken, I was riding my bicycle on a 5 mile loop around the area. I stopped to rest and soak in the view. Ironically, 3 years earlier, on November 12, I was taking in another view while seated in a comfortable chair. I was watching the TV in the chemo room while the nurse began to administer my first chemo treatment. Even though I initially regarded that day as the beginning of something bad, I now look back on it with a different view.

Maybe the cancer diagnosis I was given was not the beginning of an end, but, like Christmas, the beginning of a beginning. I think of all the times I have heard, "Now that Christmas is over....." in the past few days. Maybe all of the tasks associated with the preparation for the events that occur on December 25 are indeed completed, but Christmas really isn't over. It would be the same as mining the ore, refining it, shaping it into pieces of steel, cutting those pieces into parts, assembling them into a car, filling the car tank with gasoline and then letting it sit in your driveway without ever driving it.

The same with getting treatment for cancer. Sure, the process is cumbersome and for some folks completely awful. The point of it however, is not to die or look back on how hideous the process may have been, but to be able to....well, as I type this, I am listening to the voice of Boris Karloff...

"And they'll shriek squeaks and squeals, racing 'round on their wheels.

They'll dance with jingtinglers tied onto their heels.

They'll blow their floofloovers.

They'll bang their tartookas.

They'll blow their whohoopers.

They'll bang their gardookas.

They'll spin their trumtookas.

They'll slam their slooslunkas.

They'll beat their blumbloopas.
They'll wham their whowonkas.

And they'll play noisy games like zoozittacarzay,

A roller-skate type of lacrosse and croquet!

And then they'll make ear-splitting noises galooks

On their great big electro whocarnio flooks!

Then the Whos, young and old, will sit down to a feast.

And they'll feast! And they'll feast! And they'll FEAST! FEAST! FEAST! FEAST!" **

My friends, remember to feast - as a host and as a guest. That's what we do after Christmas.

** Text by Theodor Seuss Geisel, Bob Ogle and Irv Spector.

And To All....

2011-12-23T06:39:00.002-05:00

The newspaper editor of whom I spoke in my previous post has this image on his website this week.

I am proud of him.

In this glorious Holiday Season, may you know which gifts can be placed in a box and which ones can not.

What Once Was Lost

2011-12-08T19:04:00.008-05:00

Somewhere in the history of this blog, I mentioned something I wrote about my response to "Merry Christmas." I couldn't find it at the time. I found it while looking for something else. Here it is...

Give Christmas Away

Voices are ringing this year. They are at every pitch and every personality a voice can have. There are shouts, returned greetings, wishes followed by handshakes or hugs, all delivering the wishes of all the events and occasions that take place in this time at the start of the season of winter.

Some of those voices have also been ringing with the dismay that the greeting of “Merry Christmas” has been replaced with “Happy Holidays.” A small town newspaper editor in the December 8, 2005 edition of his paper related, “We Americans are expected to respect the cultures, traditions, and practices of other nations and peoples, and rightfully so. But what about our culture, and our traditions, and our practices? “

Who are “we?” Are “we” the Native Americans who inhabited this land before our Spanish and Anglo Saxon ancestors came here to explore? Are “we” the African Americans who were deposited here by descendants of “our” Anglo Saxon ancestors? Are “we” any of the immigrants who gazed upon the message held high by the Statue of Liberty in New York harbor?

To feel that “we” are the ones being persecuted by not being made to feel comfortable in saying “Merry Christmas” is missing the entire foundation of the Christmas Holiday. If the observers of Christmas were to be true to the holiday, evergreens in houses would have to disappear (actually, some of “our” Puritan ancestors outlawed Christmas observances in the mid 1800's in “our” country). The lights on “our” houses, the wrapping paper, the sending of Christmas cards were not part of the origin of Christmas. “We” have added all that.

Maybe saying “Happy Holidays” does diminish the amount of times we get to say the word “Christmas.” Even the word, “Christmas” wasn’t used until several centuries after the event it commemorates. Its use came about from some of “our” ancestors trying to tie in the observance of the birth of Christ to existing festivals and holidays with origins in the Roman Empire. “Our” ancestors actually caused the existing observances of Saturnalia, Yule, and the flight of Oden to be diminished or eliminated by the evolution of the Christmas holiday.

With all the compassion and joy that the Holidays observed in this time frame intend to generate, I will wish the appropriate greeting of “Merry Christmas,” “Happy Hanukah,” or “Joyous Kwanza,” when I know what greeting is appropriate. If I am not sure, I will wish “Happy Holidays” with the same compassion and joy. I don’t worry that Christmas will be taken away from me if I don’t say “Merry Christmas.” I don’t think Christmas is mine or “ours” to keep. I think Christmas is to be given away. Maybe it’s time to bring everyone together again.

I think, one day we will get to see the creator of this world. I believe when we see the creator, we will see a form like we never could have imagined. We will ask, “How did you come up with that?” The reply will be, “You could have done the same. I gave you all the ingredients.”

May Peace, Joy, Grace and Love be in your life from now until you meet the creator of this world. Happy Holidays.

Today

2011-10-27T18:40:00.002-04:00

3 years. Went to the doctor's office and left the annual "Anniversary Card" for my oncologist.

Spoke to all 3 of the people who encouraged me to go to the emergency room that afternoon and told two of them, "One of my life goals is no matter if you upset me on October 26, I will make it my mission to always shake your hand on October 27."

Go raibh maith Dia do grásta

Ich danke Gott für die Gnade

תודה לאל על החסד

نشكر الله على نعمة

Comfort And Joy

2011-10-23T07:56:00.000-04:00

In the past, I have been known to go camping in the fall. Usually around my birthday. As I haven't done it for at least 15 years, and since my birthday was on a Friday and was sharing the date with the rapture prediction by Harold ("Wait for it") Camping. I thought the irony was too great to pass up without an observance.

The scenes above are from Bear Creek Lake State Park near Cumberland, Virginia.

While there, some friends came and met me for some hiking and lunch. During our time together, I told them, "You know, there are times when I am doing some menial task at this time of year, like mowing the lawn or cleaning fallen pine needles out of my driveway, that I am reminded I was restricted from doing those kind of things for awhile and I turn them into a celebration as I am doing them. Even though I was absolutely spoiled during that time, the current status suits me fine."

Camping alone in the woods in the crisp fall air, with the scent of fallen and decomposing leaves, mixed in with the smell of a campfire, drinking fresh apple cider and eating camp food, are some of the bits of heaven I see on earth.

Know This Guy?

2011-10-10T20:17:00.003-04:00

Seth Godin?

I subscribe to his daily blog. On Friday, October 7, he posted this:

Eliminating the impulse to stall

My friend and colleague Amit Gupta is fighting off leukemia and the twittersphere is lighting up with expressions of support.

But the support he really needs is for you to get a Q-tip, stick it in your cheek and mail it back. The process is free and you can sign up right here.

The extraordinary thing about marketing is that a million people might see something or hear something or be sold something and only a thousand will actually take action. Even if it's free.

When you look at the long odds on marrow donation, it feels like a bit of a sweepstakes, but backwards. It's easy to fix if we just get everyone (regardless of ethnicity) to register.
How about if we gamify it? Here's the deal: if you are a match for Amit and the marrow donation happens, I'll profile you or the project of your choice on the blog and send you a check for $10,000 for you or the charity of your choice. Winner take all, no purchase necessary... (Even if you don't win, if you swab we all win).

I couldn't resist the opportunity to send him a note about an additional way to help Amit. That is, through the donation of blood platelets. As I have explained here, I explained to him how blood platelet donations would help Amit. To Seth's credit, he responded to me promptly with "Thanks Greg. I'm so glad you're here and caring."

Glad to help sir. Just showing up.

Godspeed to Amit.

"Look out for me, oh muddy water
Your mysteries are deep and wide
And I got a need for going some place
And I got a need to climb upon your back and ride." - Roger Miller

It Feels Kind Of Like....

2011-09-26T21:09:00.001-04:00

My grand watermelon adventure of 2011 did not succeed. I had blooms and fruit, but the fruit did not yield solid watermelon flesh throughout. There was a spoonful of edible melon flesh in the fruits that were produced, but not the way I hoped they would turn out. Seems I may have planted them too late and in the heat of the summer, their growth was stunted. But, what I needed to know is what I know now. Next year, I know when I need to plant them and how to care for them so that they yield what I hope for.

Tomorrow morning, a friend that I made in the previous year will be admitted to the Bone Marrow Unit at MCV here in Richmond. Wondering how her evening is going tonight, brought back some of my anxiety of my "Bone Marrow Eve," but I also remember the specifics of that evening included a great dinner with some friends, a drop off of a patented "bag of fun" to take to the hospital with me and shopping to get one more shirt to wear while in the hospital.

The next day was a big day. Probably the most significant day of the whole adventure. One of the thoughts in my mind was, "Here goes. This will either work or it won't." The only other day that was similar was the first day of chemo. Coincidentally, the same person gave me a ride to both events.

As the weather turns to be more like the days before my diagnosis and as the college football team I follow turned in a performance on Saturday very similar to a performance I witnessed from them a few weeks prior to being diagnosed in 2008, sometimes the head remembers how those days felt. However, since I now have a healthy appetite and it isn't painful to digest food at this point, it's all good.

The other week, I was talking to another person who is being treated for lung cancer. He's about my age and his diagnosis has a time frame associated with it. As we talked, I told him, "None of us do know when we will die. However, all of us can live every day until then."

I told him that my feeling is that a cancer patient has to deal with two cancers. The physical cancer is the one that is being attended to by doctors and nurses and the patient makes decisions based on the information being presented to them. That cancer may or may not be cured.

The other cancer is the one that goes on in the mind.

"That one," I told him, "is curable. You are, and will be, surrounded by a host of angels in this world that can and will help you with that."

It's not necessary that you know the names of the people I write about in this blog post, but it would be cool if you could think about them and send a few "Godspeeds" their way.

Maybe then, someday when they look back on the seeds that were planted for them, they will be able to share the fruits of their harvest.

Irene And The Mercy Rule

2011-09-01T18:56:00.005-04:00

Last Saturday, August 27, I was sitting in the kayak pictured above on the Cheat River, just south of Rowlesburg WV. I was checking off an item on my "bucket list." I wanted to float the river between Seven Islands (look it up on Google Maps, it's there) and Rowlesburg. When I contacted my cousins about it, they suggested we put our kayaks in the water at Seven Islands and go to the bridge where Route 50 crosses over the Cheat. That is what we did. Less than 10 minutes after putting our kayaks in the water, all 6 of us on the trip were saying to each other, "This is cool! What took us so long to finally do this?" Our trip was further enhanced by the appearance of a bald eagle and a blue heron flying ahead and over us.

At the same time that we were in the water, Hurricane Irene was pummeling North Carolina and Virginia. Frankly, I wouldn't have left town had I known what was really going to happen in Richmond, but when I got back, everything was fine except for being without electricity and some tree branches that I need to clean out of my yard. Neighbors in the back of me had trees fall on their house.

But, the serenity of kayaking on the Cheat River was were I was placed that day.

When I returned to Richmond on Monday, some traffic lights were out and as a result, the intersections became 4 way stops. That's the rule. Except for the ignorant. I mean that in the way that describes lack of knowledge and a little bit that describes those who are self-centered. Ultimately, it falls to the knowledgeable driver to be the one responsible for not causing an accident, when in that situation, someone proceeds through the intersection out of turn. That's the way it has to work, no matter how fierce a glare I shoot in the direction of the person not following the rules.

Tuesday evening, I cleaned up some of the debris in my yard and emptied my refrigerator. I then decided to purchase some batteries to use in the battery operated lamps at my house. As I left the neighborhood, I noticed that the heroes of the hurricane had arrived in our neighborhood to restore our electricity. In spite of that, I still decided to continue on the battery purchasing mission. On the way back, I stopped at a local convenience store and purchased a well earned treat - a chocolate chip cookie ice cream sandwich - paying the same for it that I paid for an amazing steak and cheese sub at Mike's Pizza in Arbutus MD during my first semester of college. In spite of the chronological price shock, I proceeded to the counter to wait my place in line; the coveted #2 position. Until.....a gentleman walked in and created a new #2 position. I unsealed "the glare" and failed to catch his eye. He kept his head turned away from mine. I turned and looked at the person behind to see if they saw what I saw. They too were looking in another direction. I concluded that the person in the new #2 position most certainly failed to follow the rule of the 4 way stop on his way to the store. I created other scenarios. In my mind, I placed him in an income bracket. I chose his automobile. I chose his college (they wear neckties to their football games).

Then, when the opening presented itself, he took his place at the counter. When he shifted his position, his face turned towards mine I was able to make a revised assessment of his background. He had physical features that could suggest he may have some form of intellectual disability. Geez.

Somewhere in my blog is a story about making sure I know the story behind another person's actions before I make any assessments.

The serenity of a normally calm river winding through a wooded mountain ridge; the raging power of a hurricane unleashing furious winds, while dropping rain to quench a forest fire; and another human, placed in a location to catch the eye and soul of another human; are what keep this home we call earth (and someday, Heaven) in motion.

"Do not forget to entertain strangers, for by so doing some people have entertained angels without knowing it."

Four To Go

2011-08-13T08:37:00.003-04:00

Told Annette yesterday, "You know, we only have four more of these bone marrow biopsies left over the next three years and that means we are well over halfway of the total number of them that you will have had to give me."

She seemed surprised that we were that far along, but I also now she was mostly relieved we at that point. Once again, she did a fantastic job of keeping the discomfort at a minimum. There were some "Ow's" that I recall from the past that I did not even experience yesterday.

I also told her, "I may do something really silly (not indecent, mind you) on the day of the final one in 2014." I have some ideas, but nothing concrete yet.

When it comes to that kind of thing, I don't think she has any fear.

Interesting medical fact......Every time she has performed a bone marrow biopsy on me, she comments about how strong my bones are and how tough it is for her to get through. Having a little of the "cancer paranoia," I asked what her take was on that. She explained that for older patients in their 60's-70's, as their bones are a little weaker, it is an easier process, but for patients in their 50's and younger, who are in relatively good health, the bone is a little harder to get through.

So I guess that's a good thing.

Ironically enough, I'm listening to the Mary Chapin Carpenter song, "I Feel Lucky," as I type this.

I would be even more excited to hear her singing "Passionate Kisses" to me in person.

Freshness Guaranteed

2011-08-11T05:26:00.002-04:00

Now here's an idea you may never have thought of.....

If you ever have a friend who has surgery and will have a bandage covering the area where the surgery took place, and they want to be able to take a shower without getting the bandage wet.....

1) Buy them a handheld shower that will allow them to direct the water more precisely than a wall mounted shower head. You can get them at a starting cost of around $15.00 and up.

2) Here's the best thing you can do.....Buy them a roll or two of Glad Press and Seal. I'm breaking my own rule of inserting brand names, but it is the only product I've seen like it. In addition, the instructions that came from the hospital after I had my port removed, listed it by name. Tearing off a piece of it, larger than the bandaged area, and then applying it directly to your skin, allows you to take a shower without fear of soaking the dressing bandage. I've used it for the fourth time now since my "sabbatical" started and it works great! You shouldn't point the shower head directly at it, but it allows you to clean in the neighborhood.

Just throwing that out there.....

First MRSA And Now I'm A Biohazard

2011-08-08T21:26:00.001-04:00

The port came out today, The Physician Assistant did a great job. No discomfort at all during the process. It probably took about 15-20 minutes. My question of, "Can I keep the port to show others what it looks like and how it works?," was answered with, "No, once it is removed it is considered medical waste and ultimately a bio hazard."

Somewhere in grade school I was probably accused of having "the cooties," but was never called a producer of bio hazard material. I consider it a promotion. Considering some of the stuff that traveled through the port, it is for the best that it now resides in a waste disposal facility at this moment.

Kudos, however, to how clean it looked after it was removed (they did let me look at it and say "goodbye."). I guess it speaks to the great shape of the neighborhood in which it resided since early November 2008. Seriously, I expected it to look like, well, like what the T-bone in a raw T-bone steak would look like after it had been eaten. Not so much. It looked as if it was brand new out of the package. The area where it was accessed (labeled as the "septum" in the picture below) was intact and I was unable to discern that any needles had ever penetrated it.

(actual size about the width of a quarter and about as thick as your thumbnail is wide)

One of the nurses asked me, "If you ever had a relapse, would you have another power port inserted?" "In a minute," I replied, "It sure beat getting stuck by an IV needle for every infusion, transfusion and collection."

However, for this port, it was time to let it go. The prime medical consideration for having it removed is that at any time, the body could reject it and create a "Graft vs. Host" situation.

So...........farewell my purple friend......thanks for helping me out........and for the members of your family that follow in the years to follow.....

Getting The Brain To Catch Up

2011-07-29T20:30:00.000-04:00

Yesterday was the official 6 month follow up visit with my oncologist. She had reviewed the scans from last week and her first words to me as she entered the examination room were, "Your scans came back all clear." My blood work for the day is in the normal ranges - them darn platelets are still about where they were when I was first diagnosed - still in the normal range - but no where near where they were during treatments. Left on the schedule for the 6 month "routine" is a pulmonary function test and.....the bone marrow biopsy (over that anxiety a long time ago).

We also discussed that my power port will be scheduled to be removed. The official date for its removal is August 8 at 9AM. It is an outpatient procedure which I can drive myself to and from and go to work afterwards. I'm sure there will be some physical limitations for a few days afterwards. So be it. I guess it will be the week of taking things out of me as the following Friday (August 12) is t he bone marrow biopsy.

Interesting thoughts about the removal of the port. When I completed treatments, I immediately asked how quickly we could remove it. "Let's leave it in a little while," the doctor replied. I wondered why and developed scenarios, but ultimately it was a wise decision on her part as I needed the IVIG infusions between November 2009 and July 2010. Leaving it in another year just to make sure blood levels were holding up now makes sense.

However, now that it's removal is inevitable, I have mixed thoughts about it. Wasn't sure why at first, but I think I figured it out.

When I went home after the first chemo treatment, when I left the hospital after the stem cell transplant, when my parents went home after staying with me two weeks straight when I was released from the hospital, when I went back to work full time, when I made my first out of town trip following my "sabbatical", and when I stepped back on stage as part of a theatrical cast, there was anxiety. It was because I had to let go of some sort of lifeline that I had been holding onto. My body was ready for the increased independence, but the brain wasn't in sync quite yet. With time, I accepted the independence and took a deep swallow of "normal."

So it goes with the power port. It is the last official physical thing that connects me to the care I received. I'm contemplating asking if I can have it after it is removed. Not so much to frame and hang on the wall, but rather to display to others and remove some of cancer's mystique. Initially, I didn't like why I had it in me, and I didn't even look at it. Now, I look at it, but I won't intentionally touch the area of my skin where it resides underneath. Only by the cleansing ability of the water and soap that ran over that area of my skin is why there isn't a layer of grime on my skin in that area. Once the removal incision heals, I'll give that area a good scrub.

Funny story about the port....During the recent show I was in, my final scene on stage involved my getting shot at on stage and as a result, my character collapsed and died on stage. I would fall on my right side -where the port is. I never gave thought that I would fall on the port as I always fell on my shoulder and hip. Until the night before I knew my Nurse Practitioner would be in the audience the next day. I asked her after the show if the thought, "I hope he didn't fall on his port," went through her mind.

I got a look.

If they let me keep it, look for a picture of it here soon afterwards.

Was Yesterday

2011-07-24T14:11:00.000-04:00

The second anniversary of my stem cell return.

How did I celebrate?

I went to a party. A party in honor of the person I spoke about in my December 31, 2010 post. She passed away in April. When I thought of her I remembered several comets that appeared in the sky during my teen years. I had never seen one before and a couple of them during that time were "no shows." Never saw them. I can't remember specifically which one I did see, but I did see it. The best time to observe it was sometime after midnight. As I usually went to bed in the 9:30-10:00 time frame, I didn't stay up to see it, but I did wake up sometime after midnight one night, looked at my clock and then went to the kitchen window of our house, which faced east, and I saw it in the sky. It wasn't the blazing ball of fire that I expected, but rather a slightly glowing streak that stretched from near the eastern horizon to somewhere almost directly overhead. "What a bust," I thought, "Maybe Halley's comet in a few years will beat it." I saw Halley's comet in 1986 and was not impressed.

As I remembered my friend yesterday, I remembered that I have two of her messages to me on my answering machine. I will not erase them. They were messages in which she called me her friend and a hero. Hero....hardly. I was fortunate enough to get to meet and know her in a short time frame (less than a year), but we shared conversations about our cancers (her cancer was different than mine) and how to deal with the mental challenges. During her cancer experience, she grasped life and lived it and it was never more demonstrated than in a picture of her that was at the party yesterday. It was a picture of her dancing on the beach in a sundress a few months after her diagnosis.

The comets in the sky were not so much. The bright light that shone in my friend and still shines in the hearts and memories of her family and friends......impressive.

"It will not come by watching for it. It will not be said, 'Look here!' or 'Look there!'. Rather, the Father's kingdom is spread out upon the Earth, and people don't see it!"

I Was That Close

2011-07-16T10:39:00.001-04:00

To taking some homemade treats to my friends at the Bone Marrow Transplant Unit today to "celebrate" my second anniversary of meeting them.

Then I remembered that I was diagnosed with a MRSA infection a couple weeks ago (no idea how that came about, although I have some theories) and am finishing up my antibiotic regimen for that. Didn't want to take anything else down there except for some treats, so I'll wait and maybe go down on the anniversary of my release from there.

The MRSA thing, not a big concern. I initially thought it was some "adult puberty" in the form of a pimple on my forehead. Then, I realized that its initial appearance was a scab. Then, I thought it could be a spider bite. Was feeling pretty fatigued, headache that wouldn't go away and some cold chills in the middle of the night. I investigated on the internet - when will I learn NOT to do that. Went to the doctor and gave them my diagnosis and they gave me their diagnosis instead. I didn't ask for a second opinion. Treatment called for an antibiotic twice daily for 21 days and using a soap that medical professionals use to scrub my fingernails and forehead area.

My question for my oncologist, when I see here in a week and a half, will be, "Even though it has been over a year and a half, is my immune system still somewhat compromised?" We'll see.

Totally forgot last week that I have a regularly scheduled CT scan on Monday - until a reminder popped up on my computer calender to pick up the "Banana Smoothie" contrast solution yesterday. I actually called the hospital to confirm I had an appt. on Monday. I do. Would make sense that I do since I have an appt. with the doctor on the 28th to review the results of the scan.

A co-worker, who was very supportive of me during my "sabbatical" was diagnosed with a rare form of cancer in May and passed way on July 6. Was a bit of a shock and was especially difficult for him and his family as he was a few years younger than me, had a wife and two sons (one in high school and one in college). Made me start thinking as to whether a major illness is more difficult for a person in a relationship or for a single person. I have thoughts to share on that. Will be interested in yours. Will make it the subject of an upcoming post.

Andri (Part 2)

2011-06-22T21:13:00.001-04:00

"You like that life? Kind of tough to settle in and make friends."

"Actually, I have lots of friends everywhere I've been. The best part....you get to tell your stories and jokes new every time you relocate somewhere. I like to think I stay long enough to be considered boring and then I move on. It's been a rewarding experience. Someday, when I'm finished, I'll stop doing it. For now, I'll stick with it."

"Good for you."

Silence. Andri looked at the clock to see if it was 20 after or 20 until the hour. He had heard that when the silence happens in a conversation, for some reason it always occurs at that time in the hour. The clock showed 6:29.

"Not this time, " he whispered to himself.

"Not this time, what?" asked his new friend.

Andri relayed the story of the "clock silence" and expressed his belief that he had seen it happen more than once.

"Interesting. In some of the places I have been, I have heard the same story. Except, the time is different based on where I am. Some places, it is 10 after and 10 of, others are 15, some have been 7, etc., etc. Don't know why there is that variation, but I guess that is what makes humanity interesting. Similar, yet different."

"Guess so."

"Sir, your platelet counts are good today. Do you have time to give us a double?", Joni, the staff member asked, "You'll be in the chair about 75 minutes once we start collecting."

"Sure thing. Good way to impress you all on my first visit here."

"Thank you sir. We appreciate it."

"Andri, you'll be out of here in about an hour. However, your platelets will be used up before day end right here at the hospital."

"Excellent. Be out of your hair soon enough, I guess."

"Yes, but we will expect to see you back in a couple weeks."

Andri's collection went without a hitch and indeed he was finished in a little over an hour. He never really stuck around for the snacks afterwards. He had done this long enough to know he never experienced any side effects and his office was less than a mile away, so if he had any problems, there would be someone around to help.

"Catch you all later. Nice to meet you sir. See you around. Don't let these folks tell you they need to switch arms in the middle of your collection. That is there favorite initiation ritual to new people."

"Get out of here, Andri. Don't lie to him."

"Someone needs to tell him the truth."

With that he was out the door and down the sidewalk.

"Good start to the day," he thought. He only hoped that the person receiving his platelets would have plenty more good days ahead.

Part Of Chapter 2

2011-06-19T20:06:00.001-04:00

CHAPTER 2: ANDRI

Andri was normally the first appointment of the day at The Blood Bank in University Hospital. He would arrive early, make his donation and then head off to work, arriving 15 minutes later than normal. He was surprised when he saw another person already in one of the chairs beginning the platelet donation process. He felt like the staff had “cheated” on him. He felt that he had developed a bond with them because of his early arrival time. Given the time of the day, there normally weren’t a lot of folks donating and in spite of the fact that he would bring along a book or a DVD to watch, he would usually end up talking to the staff for the two hours he was there. It was a time for him them to bond by sharing stories of vacations, celebrations and heartbreaks. In addition, they solved all of the worlds’ problems and in doing so, brought peace on earth.

Andri knew of the value of platelet donations to those who ended up receiving them. He knew they were needed by those going through chemotherapy treatments for cancer. He wasn’t sure exactly how, but he had known too many people affected by his nemesis, cancer, and this was his way of striking back. In fact, his donation today was going to be used specifically for a current patient that he was matched to. He heard the stories of previous donors being matched and eventually meeting each other. He wished for that for himself, but it hadn’t happened yet. In addition, he also had signed up to be a bone marrow donor for the same reason.

Maybe even he was sometimes a little too proud of his mission. He always wondered if the others in the chairs next to him were as altruistic. Until the time he saw a donor a few chairs down nearly pass out as they began the process. Once the staff stabilized them, he asked quietly, “Are they OK?”

“They’re fine,” the staff member replied, “Can’t tell you their background due to HIPPA, but they are as dedicated as you to helping cancer patients. Let’s get you started. What arm do you want to use today?”

“Yours.”

“Ha! That’s a new one.”

“From me?”

“Nope, first time I’ve ever heard that response. However, it doesn’t surprise me that it came from you.”

On this day, Andri was a little too tired from some long hours at work and restless nights to engage in too much wittiness. Plus, the guy in the next chair, well, something didn’t seem right about him. It was as if there were words poised on the tip of his tongue and in his countenance, but he wasn’t saying much.

“Maybe a first timer. Might need some calming,” Andri thought.

Suddenly, he spoke.

“Nervous?” he asked Andri.

“Nope. Done it many times before. Actually, this is my 40^th time. Used to it. How about you.”

“Don’t know how many times or how long. Seems like it’s been forever. This is the first time here, however. Just moved to town.”

“Where did you move from?”

“Let’s see, where haven’t I lived? My job takes me all over the world. Last place I lived before moving here was Toulouse, in France”

“Gipsy Kings!”

“Close. Love those guys!”

“What were you doing over there?”

“I do missions world-wide. So now I’m here.”

“Interesting. How long are you here for?”

“Probably a few years. That’s been my history. Spend 3 years or so getting a project up and running, and then I move on to the next one.” (to be continued)

A Promise

2011-06-17T21:31:00.000-04:00

Was reading some blog posts from last year and was reminded I promised this:

CHAPTER 1: THOMAS

Thomas wanted a view. He wanted to see. The floor of the hospital where he was being treated had windows that faced east and windows that faced west. The east facing windows looked out over a vista that stretched at least 5 miles from right to left and 3 miles straight ahead. There were multiple urban streets, an interstate highway, railroad tracks, a river and a view of one the nighttime city hotspots. Plenty to look at, plenty to see. Looking at the view confirmed that the city was alive. The trade off was that the room was smaller. It was a room that would have been considered a private room in its past. On this floor, all of the rooms were private, except that the west facing rooms were originally semi-private rooms and were somewhat larger.

Thomas’s view, out of the west facing rooms, was of adjoining hospital buildings of various architecture and construction. The buildings included the original hospital structure that was constructed as part of the WPA program. The red brick and copper roof structure with a visually interesting personality stood in contrast to the concrete walls of the other buildings that created a non-descript canyon. Another building had what looked like to be a light blue rope light along the top edge that lit up at dusk and stayed on until dawn. He thought it to be of decorative intent, but wondered if it was also intended to help Medevac pilots to find the adjoining building where the landing pad was located. It didn’t matter much. By the time the sun reached the point in the sky when it would shine directly into his room, Thomas would lower the blinds and take a visual siesta from the scene until the sun went beyond the man-made horizon. He would then raise the blind and keep it there until right before he fell asleep for the evening.

The view Thomas most wanted to see, he missed. Fourteen days after his admission for chemotherapy that required a stem cell transplant to “rescue” his immune system, Thomas would be infused with various blood products including whole blood, platelets and plasma. It was a non-invasive process with minimal risks, but there was always the possibility of his body rejecting the new guests in his system. At this point in his life, he was at his most susceptible to infections and viruses. Although he was alert and felt reasonably well, he literally was as close to death’s door as he had ever been in his life. A sobering thought for sure, but he looked at it as there was nowhere to go but up from here.

The infusion process would start somewhere around 11:00 PM and continue through the night. Thomas had accepted that it would be a restless night, but as he had nowhere to go the next day, he could make up for lost sleep during the day. He normally settled in for the night shortly after the 10:00 visit from the nurse when she would administer the prescribed medications, including his sleeping pill.

The next time his eyes opened, the nurse wakened him to take his vital signs.

“How we doing?” he asked the nurse.

“Not long until we are finished,” she replied.

“Are you taking my vital signs early because there is a problem?”

“No, it’s 4:15 and that’s the normal time I do it.”

“Seriously, I’ve slept through five hours of you changing infusion bags?”

“Yes sir.”

“A miracle,” he thought to himself.

Lets Hear It For The Boys

2011-06-01T21:22:00.004-04:00

I like that you continue to ask about Bo and Hunter.

This is a picture of Mr. Bo and Miss Ally Baker from Easter morning:

And this is his latest news from his Caring Bridge site

This is a recent post from Hunter's Mothers Facebook page:
CANCER FREE....the two best words a mommy and daddy can ever hear!!!! Many thanks for all your prayers!!

And this, from a recent article in The Richmond Times Dispatch about yet another oncology nurse from Richmond being a finalist in this year's Extraordinary Healer Contest, sponsored by CURE Magazine.

"That jukebox in the corner blasting out my favorite song
The nights are getting warmer, it won't be long
Won't be long till summer comes
Now that the boys are here again
The boys are back in town........
Spread the word around" - Thin Lizzy

The Resurrection And Cancer

2011-04-24T20:43:00.000-04:00

It's a given that when I have driving time, I also have thinking time. Sure, I have the tunes playing almost non-stop (the good part of having satellite radio), but during my extended drive time, I ponder.

Today being Easter, well.....

2 years ago, a different kind of Easter, for it was the weekend following my first round of chemo treatment #2 and I was on the "no out of town" driving restrictions. I stayed put and enjoyed the company of some friends here in town.

This year (and last year), a "normal" Easter.

Even though I was raised in the Christian tradition, sometimes I struggle with the church's message on the whole Easter thing. Seems there is a lot of focus on the Crucifixion (as evidenced by the presence of crosses in Christian sanctuaries) and the sacrifice made through the act. I've heard the message of "Since Jesus conquered death, we no longer have to fear death. That's the gift of the Resurrection."

Really? Is that all there is to it?

Here I sit, no signs of cancerous activity in my body. So...I no longer have to fear cancer, or the potential of a relapse? There is the possibility that 3-1/2 years from now, I will be considered "cured" if there are no more signs of cancer in my body between now and then (technically, I would be cured of the Non Hodgkins "alien," but if a secondary cancer occurred, I would not be considered cured of all cancer).

However if you think I am saying that once I am cured of the "alien" I would no longer have to fear the "alien" and that would be the official end of my cancer experience, your thoughts are not necessarily where I am heading with this.

Once I experienced the "alien" and its impact on me, and also interacted with others experiencing their own "aliens," I learned that those of us in the cancer community (that would include you, even if you've never been diagnosed with it - the fact that you are reading this, makes you part of the community), not only can work to find a cure, but we can also work to make the lives of cancer patients better while they travel through their cancer journeys. Those of us who know you can LIVE through a cancer experience can deliver that hope and experience to others who are struggling. In my conversations with other patients, I never promise them that they will be cleared or cured of cancer. What I do promise them is that there are people in their lives, and people who will enter the lives, who will want to show them how and why to live.

To close, thought I'd resurrect this from a previous post:

"Drinking life
That's the thing
Makes a man want to suddenly sing
Sing and dance
And perchance
Seeing life from a different stance
When you learn how to live it
Life is free of strife
That is why I like life!
That's the secret of living" - Leslie Bricusse

And I Paraphrase

2011-03-24T20:36:00.004-04:00

I had a chance to hear Dr. George Church speak at The Richmond Forum last Saturday night. He is a soft-spoken man; very intelligent and very wise.

The statement he made that most struck me was when he was asked, "Do you believe in God?", he replied (and I paraphrase), "Most of my colleagues are atheists, but I do believe in God. I find what I do does not draw me away from God, but rather it increases my awe of God and creation."

Well said, Doctor.

I find myself with the same vision. I don't struggle with scientific research and the discoveries that are made. I have no problem with theories. If they conflict with Old Testament stories, I'm intrigued. However, that is not why I believe I am here. I have no interest in debating the details of the stories that are shared among numerous faith traditions. I'm here to, well, this comes to mind...

Blessed are the poor in spirit,
   for theirs is the kingdom of heaven.
Blessed are those who mourn,
   for they will be comforted.
Blessed are the meek,
   for they will inherit the earth.
Blessed are those who hunger and thirst for righteousness,
   for they will be filled.
Blessed are the merciful,
   for they will be shown mercy.
Blessed are the pure in heart,
   for they will see God.
Blessed are the peacemakers,
   for they will be called children of God.
Blessed are those who are persecuted because of righteousness,
   for theirs is the kingdom of heaven

I really don't read anything in there that instructs me to debate nonsensical topics. I was talking to someone yesterday whose daughter wants to go to college and study genomics. Her daughter has a pretty strong faith structure and is constantly asked about the "conflict" between her chosen field of study and her faith. I told her mother about Dr. Church's comment above.

Here's my take...If some day, God reveals that we really did descend from one cell organisms (and I have to accept the humility of my ancestry), I will be amazed at how it happened. If God snapped his fingers like David Blaine and made things instantly happen, I'm good with that too.

Whatever.

A Grand Day For You

2011-03-17T05:00:00.002-04:00

Walking into the pub, Patick said to the bartender,
"Pour me astiff one, Sean. I just had another tiff with
the little woman."
"Oh yeah," said Sean. "And how did this one end?"
"Well I'll tell ya now when it was over," Patick replied, "herself came
to me on her hands and knees, she did."
"You don't say? Now that`s a switch! What did she say?" She said, "Come
out from under that bed, you gutless weasel!

A group of Americans was touring Ireland.
One of the women in the group was a real curmudgeon, constantly complaining.
The bus seats are uncomfortable. The food is terrible.
It's too hot. It's too cold. The accommodations are awful.
The group arrived at the site of the famous Blarney Stone.
"Good luck will be followin' ya all your days if you kiss the Blarney Stone,"the guide said.
"Unfortunately, it's being cleaned today and so no one will be able to kiss it.
Perhaps we can come back tomorrow."
"We can't be here tomorrow," the nasty woman shouted.
"We have some other boring tour to go on.
So I guess we can't kiss the stupid stone."
"Well now," the guide said, "it is said that if you kiss someone who has kissed the stone, you'll have the same good fortune."
"And I suppose you've kissed the stone," the woman scoffed.
"No, ma'am," the frustrated guide said, "but I've sat on it."

An Irishman walks into the pub and orders three pints of Guinness. He asks that they be brought over to him at the table. The Irishman drinks the pints one at a time and then leave. This routine goes on for about two months. Finally, the bartender asks why the Irishman has the three pints. "Well'" he says, " The first pint is for me brudder in Amerikay and the second is for me brudder in England." The bartender nods in agreement and tells the lads at the bar who have witnessed the comings and goings for the two months. Several weeks latter, the Irishman enters the pub and orders two pints. As the bartender walks up to the table with a pint in each hand, he says. "If you don't mind my asking, have you lost one of your brother?" The Irishman pauses for a second, sees the two pints and says, "Oh forsakes no, me missus has me off the liquor.

O'Malley was leaving his favorite bar when he was run over by a bus. He gets to the gates of heaven and St. Peter tells him he cannot enter unless he passes a test. What choice did he have, O'Malley agrees to try as he never was the brightest bulb in the box.

St. Peter decides to go easy on him, 'What has 5 fingers and is made of black leather?' he asks. O'Malley scratches his head, thinks hard and finally gives up. 'It's a glove says St. Peter.' Let's try again. 'What has 10 fingers and is made of black leather?' asks St. Peter. O'Malley is clearly stumped. After a few minutes of pacing in a circle and scratching his head, O'Malley gives up. 'Why it's 2 gloves - don't you see 10 fingers, black leather, says St. Peter amazed.' Being in a generous mood, St. Peter decides to give O'Malley yet another chance but thinking of an even easier question.

'Who is the patron Saint of Ireland?' asks St. Peter, thinking he can't miss this.
'It wouldn't be 3-gloves, would it?' says O'Malley.

Follow The Bouncing Platelets

2011-03-16T19:24:00.000-04:00

More learning. When I met with the doctor a few weeks back, my platelet count had dipped to just above the low end of normal. 4 days later, they had dipped to slightly below normal. I was pretty sensitive about it as they were at the levels they were at about a month before my "sabbatical" started. To appease me, my favorite Nurse Practitioner scheduled me for another blood test yesterday.

They are inching back up and are now slightly above normal. All other blood counts are fine and well within the normal range.

What happened?

I found out that normally, platelets bounce around pretty routinely for everyone. The decrease in my platelet count was not within a normal decrease in the amount of time that had passed (November - February).

Unless....one has been treated by antibiotics in that time frame. And I had. I had an upper respiratory infection in January (just so I would fit in with the rest of Richmond at the time as everyone seemed to have some sort of wheezing and coughing going on) and was prescribed an antibiotic. They will cause platelets to drop.

What a putz.

When Bill Clinton visited the Pope, he noticed a red
phone on a small table in the corner of the office.

After several minutes of conversation, Clinton asked
the Pope what the red phone was.

The Holy Father told him that it was a very special
phone with a direct line to God. However, the Pope
told Clinton he rarely used it because it cost
$20,000 a minute from the Vatican.

Clinton accepted this explanation without another thought.

Later, when Clinton visited Ireland, he saw another
red phone in the Archbishop’s office. Being curious,
Clinton asked the Archbishop what it was used for.

The Archbishop told Clinton it was a direct line to God,
and he used it whenever he had a puzzling question or concern.

Clinton asked if the calls were quite expensive since
the Pope had to pay $20,000 a minute when he used
his red phone in the Vatican.

"Oh no," replied the Archbishop, "In Ireland it’s a local call."

Maybe, Because....

2011-03-11T21:57:00.002-05:00

I feel that you need to watch this video. It makes me happy to watch it.

I'm conflicted about posting it today because of the news from Japan. However, the video speaks to me as to why the news from Japan concerns us. There will be a lot of clean up work to do, bones to mend,structures to reconstruct, and fears to be calmed. Most of all, we grieve because there will also be bodies to find. Bodies that transported lives that were cut short.

The video is from a show titled, "Grand Hotel." I remembering seeing this performance on the Tony Awards some years back. A year or so later, I had the opportunity to see the show on Broadway. The only reason I wanted to see the show was because of this clip. I remember flying into New York and arriving at my hotel a little after 6PM. My hotel was about a 30 minute walk from the theatre. I called the theatre and asked them if they had one ticket for the evening's performance. They did and I was seated about 9 rows back from the stage in the center of the row. I will never forget that evening.

In the video, the character portrayed by Michael Jeter is ill and facing the end of his days. And yet, he takes part in a celebration.

Processing the news from Japan reminds us of our mortality and how there are things in this world over which we have no control.Yet, it is still our world in which to live.

We can say the world is going to hell in a hand basket, but to say it means we are holding the basket.

Or, we can help others live and live again.

Maybe even help them celebrate life.

A Small Bit Of News

2011-03-08T17:52:00.000-05:00

My oncologist's nurse called me today. When I saw the phone number on caller ID, I knew it looked familiar, but wasn't able to place it.

When I answered and heard who it was, I caught my breath for a moment. As I've said before, when she calls, it usually means the doctor wants to see me to review something important.

Today's call was to tell me that my bone marrow biopsy results came back and they are all clear. Nothing of concern there. The only thing left is another check on the blood next Tuesday. Nothing major about that.

Next page.

I mentioned the other week I auditioned for a role in a local community theatre production of "Curtains." It's a musical that was on Broadway in 2007. Don't Google it to avoid spoiling the plot. I was cast and we open on May 6. I have to get back in the swing of things with the whole rehearsal schedule stuff. It's not bad and the cast is a great group of people (old and new friends).

"Places!"

Translation, Please...

2011-03-07T21:39:00.000-05:00

I was contacted last Friday by one of my contacts from the National Coalition for Cancer Survivorship. He asked me if I would be interested in being interviewed for a newspaper article about the American Health Care system and how, as a cancer patient/survivor, it affected me. I was all over it. Especially when I saw that it was for the Tokyo Shimbun Newspaper. As I've said to others, if you had told me 35 years ago, when I was standing on the haywagon, stacking hay, that I would one day be interviewed by a Japanese newspaper, I would have asked for some of what you were drinking. Pretty cool stuff.

As you know, I had something to say to them. I spoke about things I have talked about here before, so I won't bore you with the details, but if I have to say so myself, I think I articulated pretty well my perception of the challenges that a cancer patient faces at the outset, during the time of treatment, and what lies ahead. It's not a walk in the park, and it probably never will be.

However, we ain't angels and this ain't heaven.

Yet.

Whoa, Now Hold On There Partner...

2011-03-02T19:57:00.000-05:00

Holding off sharing any of the medical stuff from recent appts. as there is still some information to come...i.e. the most recent bone marrow biopsy was Monday and it takes a week or so for those results to come back. Initial comments from the doctors are all positive.

While at MCV on Friday, I had a chance to also visit with the good folks on the hospital floor where I spent my 3 week "vacation" and also had a chance to visit the folks in the lab that collected my stem cells. It is truly humbling to have them greet you warmly when they see you. While in the stem cell lab, I had a chance to have a conversation with a patient who was having stem cells collected and is waiting for her admission to the hospital. She was pretty anxious about what was ahead of her. I shared my story and offered her support. It was humbling to be able to do that.

Saw "Super Bo" and his family (including his new sister) last Saturday. They all looked great and Bo KO'ed me in a game of Wii boxing. Once I realized his avatar was wearing Duke blue, I came back in the next match and ended it early.

“Now I begin to feel that all that is important comes in quietness and waiting; and that activity should be only the working out, the digesting and putting forth of what one learned, so that one may become empty again to receive more.” - Rodney Collin

The Value Of Evaluation

2011-02-12T08:44:00.000-05:00

In a few hours, I will be riding along with a friend on a road trip to Harrisonburg VA (about 2.25 hours from here). My friend is the one doing the driving. She has been invited to be the guest speaker at a church over there (where we both attended at the same time almost 20 years ago). She asked me to ride along with her. Since someone else is driving and because my car has 245,000 miles on it in less than 9 years, it will feel good to be a rider. I don't think I've ridden in a car as a passenger for any distance over 10-20 miles in years.

Was looking back on some old blog posts from 2009 when I couldn't wait to start driving again.

Naturally, I go back and read some blog posts from the beginning just to remember and evaluate where I was and where I am. In my eyes some of those earlier blog posts were pretty naive. However, they were honest. They were naive in the fact that I really didn't research the treatment options and didn't really consider the long term effects they would have on me. I've heard my treatments referred to as "the big guns" by those in the profession. No questioning what that means, but there are questions about what effects the treatment could potentially have on me, physically, later in life. I don't obsess over those questions and they don't keep me awake at night.

I've said it before, and I'll say it again, what I don't regret is that the decisions I made in the early days were based on trust in the individual who presented the options to me. I did have others along with me during some of the appointments when the options were presented, but to their credit, those that went along with me knew that the final decisions rested with me.

Since I feel good now ("Better Living Through Chemistry"), I trust myself and those that presented the options to me. Somehow, I think that presenting your trust to others is a momentum changing activity. Potentially even with someone who may have less than honorable intentions. In the beginning, when I couldn't understand why some of those around me weren't acting the way I wanted them to, several folks said to me, "The way to change others is to change yourself first. You have to decide the type of behavior that is acceptable and then you have to present it and LIVE it." They were right.

I met some folks in the process with who I didn't instantly connect. I advocated for myself when I met those folks, but I didn't do it in a adversarial manner. I used humor and some firmness, and it worked. I will tell you that there are some folks that if I encountered again, I would release some of the "hounds of Greg" on them. However, there were countless others that accepted my trust and repaid it many times over.

My focus and forward vision is a result of them.

'No government can help the destinies of people who insist in putting sectional and class consciousness ahead of general weal.'' Franklin D. Roosevelt

In Print

2011-02-04T19:08:00.005-05:00

Last week, I opened the mailbox and saw a package in there from CURE Media Group. I knew right away what it was and it was pretty exciting. They have published and printed this years edition of "Extraordinary Healers: CURE Readers Honor Oncology Nurses" and they sent me a printed copy of it. It was pretty cool to open it and see the essay in print along with a picture of Annette and myself and then an essay that Annette wrote (that was well done - but why would that be a surprise to anyone).

Not fishing for compliments here, but I also have a response of , "Not sure why this is a big deal. It really wasn't that hard to write it." But the next voice I hear is what I've said before, "I didn't write it. The person whom the essay was about wrote it. I added the words."

The book will be available for purchase from the folks at CURE, but they haven't posted the link on their website yet.

So, where is the head of a cancer patient who is approaching being one year out from any kind of infusion and is a year and a half out from the last time chemo entered the body?

This is where I've read some of us are:

1) We miss the regular contact with the caregivers with who we were engaged in numerous visits over a short amount of time during one of the most dramatic times of our lives.

2) Is this persistent cough/congestion just like what everyone else is fighting, or how much longer do I fight it without a doctor visit?

3) Last night, a different kind of anxiety dream. One of being readmitted to MCV, but this time in a semi-private room. In the dream I was more concerned about sharing a room than I was about whatever I was being treated for. This morning, as I washed my hair in the shower, I thanked God for a spacious shower, not being hooked up to an IV line while I was showering, and for hair to shampoo and rinse (I know the amount of hair on my head is not as voluminous as some other heads of hair, but there is hair there. The bald spot is because the brain keeps asking for more room).

Up next...regular visit with the oncologist on Feb 24, 1.5 year followup with the MCV docs on Feb 25, and then a bone marrow biopsy sometime in the next month or so I would guess.

Oh yeh....for the first time in 3 years, I will be auditioning for a local theatre production on Monday night. I'll keep you posted on that. I guess that's another place where the head is. Not a bad place to go.

And just for fun. Love this!

"But Now I See"

2011-01-24T19:42:00.001-05:00

Always learning.

The follow up schedule from the folks at MCV indicates that I need to get an eye exam once a year. No kidding. I thought it was just them being helpful to remind me to do something that I should do once a year anyway. My last eye exam was December 2008, two months after I was diagnosed. As in the past, I scheduled eye exams on an "on demand" basis. If I felt my prescription had changed, then I would go get a eye exam.

The MCV schedule indicated that I was due to have an eye exam last July. I didn't. I didn't bother as I wasn't having any vision problems. Interestingly enough, when I had the eye exam in December 2008, the doctor noted that when he looked at my retina, there was a blood vessel abnormality in my eye that could indicate cancer was present in my body. When he read my information sheet, he breathed a sigh of relief, looked at me with a smile and said, "You've made my day. I thought I was going to have to share some bad news with you and refer you to an oncologist. Now that I see you are undergoing treatment for cancer, I can tell you what I saw in your retina without ruining your day."

Today, I went for an eye exam. Not entirely because I decided to follow the MCV calendar, but rather because I have been noticing that my vision has changed again. Pretty significantly. I also didn't want my doctor to think that I wasn't following the rules. If I go in to the next appt. in a couple of weeks with new glasses, she'll know I had an eye exam. Not that my current prescription isn't sufficient, but I noticed that when I would move my glasses about 4 inches away from my face while watching TV, it was like the difference between regular and HD TV.

When the doctor examined me today, he said, "Your vision has changed dramatically since your last appointment. The treatment you have been through can change the anatomy of your eye." (My eyes have not changed in shape and are not in any danger of falling out of their sockets.) "The difference between then and now is 'normal' by cancer treatment standards. Now that you are in remission and not receiving any additional treatments, your vision may not change for another ten years."

So that's why they wanted me to get regular eye exams. I get it now.

Postscript to CT scan conversation. I did call the doctor's office today and verify that they had received the reports from the CT scan. I didn't ask any more details. Here's how it would work if they did see something abnormal in that scan. The doctor would have immediately ordered a PET scan. She hasn't ordered one.

We Now Return to Your Regularly Scheduled Program

Greg, Not George

2011-01-22T11:52:00.003-05:00

As in "Curious."

Another scan has come and gone and I have no idea as to what the scan from Monday showed. Sometimes I'm a "no news is good news" kind of guy. That's how I regard scans. If I was in a relationship with someone, or was a caregiver to someone who had a scan, my outlook would be different.

My doctor and nurses communicate with me that way. We know that I won't call in for a scan result and that if all is clear, they don't need to call me. When I see my doctor in February, I'll ask her about it, but until then, I'll let it go. I almost called them yesterday, but I got sidetracked. I call that God's circumstantial will.

On another note, I'm elated about the progress of Gabrielle Giffords. I know that she is receiving the best in health care. But I wonder, what if it was someone in a less socio-economically advantaged situation? It's really not a "what if" scenario. It has happened to others, I'm certain. What decisions do they and their caregivers have to make based on ability to pay?

For myself, as I have stated before, I will have to pay out of pocket my maximum deductible/co-pay every year for the next few years. As a matter of fact, I reached it the other day when I had my CT scan (bills at around $12,000 - $14,000 each time). I won't have to pay that amount, but I will be responsible for a significant portion of it. My annual out of pocket is manageable, but it's not something I want to do the rest of my life. If it wasn't manageable (and I'm sure it isn't for a lot of folks), I would have to decide whether or not to show up for the follow up care. That is the only alternative I can see. I do know that if you are making some sort of regular payment against your outstanding balance, the health care provider can not touch your assets. But, they can deny you service.

If you disagree with a solution, it's OK to do so. Come to the conversation with another solution.

"The King will reply, 'I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.' "

Smiles In (And To) Clayton NC

2011-01-18T20:12:00.002-05:00

The explanation of this photo comes below (from an e-mail I received this morning).

"Y'all what a crazy night we've had! My water broke a little after 7:00 and by the time we were on the road to Rex, my contractions were 3 minutes apart. The baby was born at 8:24pm! Very fast. But the most amazing part is when they laid the baby on my belly, the doctor said, 'Well your boy is a girl!' Yes, the ultrasound tech was wrong. We have a baby girl!

Her name is Allyson Brindley Baker and she weighs 7lbs 15 oz and is 21 inches long. Rob and I are still in a little bit of a state of shock that we have a baby girl. Poor Bo is reeling from the news. So we'll have lots of shopping to do to replace all of our blue stuff with pink!

We're all doing great and are very excited!"

In addition to being a cool kid, Bo is now a brother. A big brother. To a little sister.

I know how that is going to go, and I can't wait to see it.

Cade meelah foyle-ta row-ott!

Facts Of Olfaction

2011-01-17T20:03:00.002-05:00

I should have known.....

Today, after I signed in at registration and before I walked down the hall to the waiting room in Radiology, I had to make a stop in the rest room. After all, I drank two 450ml bottles of contrast solution and then 24-30 ounces of water before the scan - all within a 90 minute time period. It's required by CT scan "law."

As I washed my hands, I smelled the scent of the soap. They haven't changed their soap supplier at the hospital since October 2008. The memories came right out of the recesses where they reside.

Enough so, when the nurse said to me, "We're going to put you through one more time for another picture," I tried to recall if I passed through the CT scanner the same amount of times today that I have in the past. What was the reason for the "one more picture?" Who knows? I'll know in a day or two. I'll get a call one way or the other.

Pardon me for this, but it might have been because they were amused at my intestines today. I had some serious gas. No clue why. It could have been due to the contrast solution. Possible side effects from the the oral contrast may cause nausea, vomiting, diarrhea and/or abdominal cramping.

I hope they got a picture of my good side.

Storytime

2011-01-16T18:42:00.001-05:00

I heard a story today from another person currently receiving treatments for cancer.

He is part of a male quartet and one day when he was receiving chemo, the other 3 guys in his quartet showed up and presented a mini-concert to the other patients in the room. One of those patients was another gentleman who apparently had been having a tough time emotionally with his diagnosis and treatment to the point of being known as a pretty cranky patient. Never having good things to say about anything.

The day after the "concert," the person who told me the story was back in the clinic for follow up. While there, one of the nurses told him about the cranky gentleman and that he asked after the quartet had finished, " I saw 4 guys singing, but I only saw 3 of them walk out of the room. Where did the 4th guy go?" The nurse responded, "He's sitting over there in that chair receiving treatment."

The nurse related to the person telling me the story that upon her response to the cranky guy, she could see a look come over his face as if to realize that maybe he didn't have to be cranky all the time. Maybe, there are good things to come from a diagnosis and treatment that crankiness can obscure from view.

Not to say a cancer patient can't be cranky. I had my share of it. I talk about it in earlier posts. However, if the patient had a cranky doctor or nurse, they would ask to switch. Doctors and nurses don't have that luxury. Yet, to a person, all of the doctors and nurses that I talked to would say, "It's because of the patients that come to us with an overall good outlook that keep me in my job. Otherwise, I'd see no reason to stick around."

Good stuff.

Up next for me....Banana Smoothie for breakfast tomorrow. 6 month CT scan to follow at 8AM. Results a few days later. Seriously, I have no anxiety about it.

And also with you.

Looking Back To Look Forward (or "Woulda, Coulda, Shoulda")

2011-01-15T16:24:00.003-05:00

I've started to read "The Emperor of All Maladies" as it was a Christmas gift. It looks to be an interesting read. One that I will read in short spurts as it contains multiple segments of information that I do not want to rush through.

One thing the author states early on is the tendency of patients in the past to keep private with their diagnosis and illness. It is based on behavior from thousands of years ago when cancer was an unknown affliction, without treatment, and those who were affected by it endured it in silence. It became a part of the human habit.

Considering that, I guess I went counter to human habit. Except for a select few, initially I did withhold information from those around me, including some members of my family. The reason was that I did not know the whole story about what was going on and what was going to happen. In addition, I didn't want to be deluged with holding "individual press conferences" multiple times a day. Also, without complete information, it is easy to access incorrect information about the diagnosis of the individual affected. As a matter of fact, I later learned that one outlook on me while I was in the hospital was that I may not come out of the hospital alive. I also needed time alone to process my thoughts and pending decisions. Ultimately, they were my decisions to make.

I started the blog to put the word out. It became something else. I'm grateful for that. I now recommend to anyone recently diagnosed to tell as many people in your circle as possible about what is going on. I tell them they can't do it alone. Don't try. By telling others, you will be surrounded by help and healing. I understand if someone hesitates to put the word out, but I can't recommend that you do.

I will tell you that I haven't put everything out there about my experience, some of it I've kept to myself. That's my right. However, some of those things that I've kept internal have been addressed and attended to by the grace of others who just happened to know what to do for me. Without any input from me.

Pretty neat how that works out.

“If a man be gracious and courteous to strangers, it shows he is a citizen of the world, and that his heart is no island cut off from other lands, but a continent that joins to them." - Francis Bacon

Myself Included

2011-01-09T12:09:00.001-05:00

Maybe by now, I should be an expert on the whole Health Care Debate thing. But I am not. I am more in tune to the conversation now more than ever, but who says what and what says who is currently beyond my comprehension.

However, the system is messed up. Everyone should have access to equal care. Regardless of economic status. In a capitalist society, it is perceived that economic standing dictates what level of commodity is attainable for an individual. Houses, cars, clothing, vacations, entertainment, travel are commodities. Life is not.

As of the writing of this post, I do not know what was the motivation for the gunman who shot on a crowd of people and killed 6 of them yesterday in Tucson. However, this chart troubles me. I doubt it was the intent of the originator of this chart that the people listed in this chart should be shot. I know that, and hopefully you know that. But, did yesterday's shooter know that?

I had a conversation the other day with someone about the health care debate. I told them that I thought I had a reasonably good health care plan. Then I asked them how much a month, in addition to my current health care premium, they thought I would have to pay out of pocket for the next few years for my testing (4 oncologist visits a year, 2 CT scans a year, 2 Bone Marrow Biopsies a year, 2 visits to the Bone Marrow Transplant Clinic a year, regular medical and optician appts.). When I told them, they were surprised and they said, "Something has to be done." "Exactly," I responded, "So if someone makes health care a part of the national conversation, what is wrong with that? Why do we want to leave it alone while for profit companies treat it like a commodity?"

"We the People of the United States, in Order to form a more perfect Union, establish Justice, insure domestic Tranquility, provide for the common defence, promote the general Welfare, (welfare n. 1. health, happiness, or prosperity; well-being) and secure the Blessings of Liberty to ourselves and our Posterity, do ordain and establish this Constitution for the United States of America." - The Founding Fathers

"We hold these truths to be self-evident, that all men are created equal.....

With this faith, we will be able to hew out of the mountain of despair a stone of hope. With this faith, we will be able to transform the jangling discords of our nation into a beautiful symphony of brotherhood. With this faith, we will be able to work together, to pray together, to struggle together, to go to jail together, to stand up for freedom together, knowing that we will be free one day. And this will be the day -- this will be the day when all of God's children will be able to sing with new meaning:

My country 'tis of thee, sweet land of liberty, of thee I sing.
Land where my fathers died, land of the Pilgrim's pride,
From every mountainside, let freedom ring!

And when this happens, when we allow freedom ring, when we let it ring from every village and every hamlet, from every state and every city, we will be able to speed up that day when all of God's children, black men and white men, Jews and Gentiles, Protestants and Catholics, will be able to join hands and sing in the words of the old Negro spiritual:

Free at last! Free at last!

Thank God Almighty, we are free at last!"

Martin Luther King - August 28 1963

"Windin' Your Way..."

2011-01-05T20:03:00.001-05:00

RIP Gerry Rafferty

One of my favorite songs, ever.....

"You're goin', you're goin' home."

Not As It Seems

2010-12-31T17:35:00.002-05:00

Just got back from visiting a friend in the hospital. A year ago this time, I hadn't met her. Then, sometime in May of this year, some other friends of mine told me about her. She had been recently diagnosed with ovarian cancer and had to have intestinal surgery that required the use of a colostomy bag for some time. She had the intestinal surgery reversed in October as a result of the success of her chemotherapy treatments. Things were looking up for her.

She has been dealing with some intestinal issues since November and is back in the hospital again awaiting her doctor's return from vacation to discuss how to move ahead.

She was in the hospital the week before Christmas and had her heart set on being home for Christmas. Her wish came true and she was home for Christmas but is now in the hospital for New Years. She is heartbroken, a bit cranky and low in spirit. She had expectations of how far along she should be right now with her recovery and reality is not in sync with her calendar. She is going through a different sort of advent experience. One that is not joyful and full of hope.

That her advent experience is closely connected to 4 holidays (she listed Halloween, Thanksgiving, Christmas and New Years as holidays that have been "ruined" for her this year), is the reason that as of this writing, she is not a happy soul, emotionally. Her current mental state is counter to how I have come to know her.

The emotions of a cancer patient can be like an iceberg that even the patient can not see. There are realities that hide below the surface and when they surface and the light of day shines on them, they overwhelm the mental, and ultimately physical, well being of the patient.

With that said, I think of how the list of holidays mentioned have affected my friend. I fret about the pain and pressure that have been attached to single days that commemorate what should be a full time feeling. The fun of Halloween, the overwhelming gratefulness of Thanksgiving , the hope of Christmas and the promise of the New Year should not diminish the day after. I have heard (or perhaps have become sensitive to) "Now that Christmas is out of the way, I just want to rest," more often this year than ever. It pains me to hear it.

If we can continue the energy and shine the light of the holidays even brighter the day and days after, then maybe my friend will know she can focus on getting and being well. Then, every day that follows her recovery will be a celebration for her and for others like her.

Longing for the day that the spirit of the holidays is everlasting, is my advent experience. May we all bring it about.

"There is no ideal Christmas; only the one Christmas you decide to make as a reflection of your values, desires, affections, traditions." -- Bill McKibben

I Ate One Thing At A Time

2010-12-22T19:25:00.001-05:00

As a kid, I would frustrate my family when the food was passed at supper time. I would wait for the item I wanted to eat first, put it on my plate, finish it, sometimes rinse off my plate, come back to the table and asked to be passed the next item. This was after all of the dishes had been passed and everyone else but me would put everything on their plate, finish everything and then maybe ask to be passed the dish of the item of which they wished to have seconds. It was less intrusive than my practice of interrupting the others while they were eating. I don't know how the habit started, but I know it had everything to do with not wanting to blend my food together on my plate. The statement, "What does it matter, it all ends up blended together in your stomach anyway?", didn't work for me. I have since moved beyond that practice. However, I will not put dessert on the same plate on which I ate my meal without rinsing it off first. You can't blend those two taste sensations. Turkey gravy and apple pie, do not mix! I guess I started to grow out of it when I would go to family reunions and go through the food line. Too much trouble to go back through multiple times for each item when there are multiple items of which I want to partake. That, and it's kind of rude to interrupt a conversation with a relative I haven't seen in awhile just so I can go back to the food table again and again.

And that is where I am at this writing. The last two years, I was on my "sabbatical" and an annual tradition of mine got set aside. I hesitate to speak of the tradition because I may disappoint you in that I may not get a chance to share the tradition with you this year. But....if I do disappoint you, let me know and I will do my best to make you part of it this year. Honest!

The tradition....I make apple butter from my own recipe. I've even branded it. It is called , "Angus Fraser's Applebutter." I make a couple different variations of it. One is the regular flavor, another is labeled, "Rum/Raisin," (you can figure out why) and the last one is ,"Not For The Wee Ones." Guess what that's about.

I almost did not resume the tradition this year because I'm lazy. However, one of the caregivers from my (Pause here while I listen to one of my favorite Christimas songs...by The Carpenters. If you can correctly guess what it is, you will win a free half-pint of Angus Fraser's Applebutter.) "sabbatical" told me that I needed to do so. I am proud to say that I have finished and canned one batch and another batch will probably follow over New Years. The initial reviews are that Angus Fraser is back and better than ever.

Today, I took some to the folks who were not part of the tradition prior to my "sabbatical," but were a large part of the reason I was able to resume the tradition. It felt odd to do so. I associate visiting them this time of year with going in for treatment. But now, we have a new thing to associate with this time frame.

Even though all of the dramatic stuff is over for me, it still occupies space in me. I know that it always will. However, it will not be the driver of the car. Just some stuff in the trunk that rattles around every so often that will eventually get tossed out some day. It will take time, but it will happen over time.

I reckon it's part of the process of learning to put multiple and varied items on the same plate at one time.

Behavior changes with affirmations. Stuff comes along to get your attention. Look at the title of my last post. I've was asked to read Isaiah 60:1-6 in church on January 2.

Wow.

May you not just enjoy the Holidays. May they affirm and confirm the goodness that resides in you and the rest of us.

Let it shine.

Deep peace of the running wave to you.
Deep peace of the flowing air to you.
Deep peace of the quiet earth to you.
Deep peace of the shining stars to you.
Deep peace of the infinite peace to you. -Gaelic rune

"Arise, Shine, For Your Light Has Come"

2010-12-16T20:10:00.005-05:00

Dear Friend,

This is about you. Really. However, it's from my viewpoint.

The writer of today's title was saying something that was about others, not himself. It was from his viewpoint about something he had seen.

That's what I want to tell you about today. This is the first December since 2007 in which I won't be sitting in an infusion chair. Frankly, it seems a bit odd. Those times were times when others had figuratively wrapped their arms around me and provided care. Even though I've been back to "normal" for slightly over a year, sometimes....

However, their work and support got me to where I am now. Now, I need to honor their work by continuing to step out into the world and deliver to others what was given to me.

A friend of mine posted this on her Facebook page today: "I love it when someone helps me perceive generally accepted concepts differently, revealing deeper truths . This is from Ben Campbell, Pastoral Director at Richmond Hill.

The Last Judgment is a teaching about heaven and hell, but it is not what you think. Jesus' parable at the end of Matthew where the sheep and the goats are divided defines heaven and hell. Heaven is a place where people live in community, taking the lives of the others in their community as seriously as they take their own. Hell is a place where people don't care about one another.

Heaven and hell are immediately at hand. Both are experienced in daily life. Hell is always in danger of swallowing us up. Heaven is always available, in the twinkling of an eye, in the awakening of a conscience, in the opening of a mind."

I have seen the shining light. I have glimpsed into heaven countless times in the last few years. I think that it's important to not only be open to take looks into heaven, but maybe spend some time there, learn some things, deliver them to the world, go back again and keep delivering back to the world.

You don't need to immediately start doing it on your own. The only thing you need to start doing is to be open to knowing that you are going to see and experience some pretty amazing moments. Then, at some point, if you decide to listen, the trumpet shall sound.

"Let the moment go...
Don't forget it for a moment, though.
Just remembering you've had an 'and',
When you're back to 'or',
Makes the 'or' mean more
Than it did before.
Now I understand-
And it's time to leave the woods." - Stephen Sondheim

Say, Doc....

2010-12-13T19:05:00.000-05:00

Dear Friend,

A certain guy, having just completed a meeting with his doctor in which they discussed his upcoming cancer treatments and the effect they would have on him (No, folks that know me, it's not that story), asked his doctor, "Will I be able to dance after this is all over?" She replied, "Of course you will." With relief he answered, "That's great, I've never been able to dance before!"

If I had a list of ten wishes (or so) of things that I wish I could do before I die, one of them would be to be able to dance like Danny Kaye in this video. I watched this movie the other night and remembered how this particular number blows me away every time I see it.

A common statement heard among those who have experienced major medical difficulties is that the experience does change your life. For some folks, it may be a complete 180 degree turn. For others, maybe just a couple degrees in direction. However, there is a change.

Once things get back to "normal," some of the old concerns, finances, career, retirement planning, spiritual health, etc. come back to take their "rightful" place in your life. There are those who have not been through your experience who may try to prioritize those items in your life. Don't let them. You can listen to the noise of "wise" counsel, or, alternatively, you can seek out wisdom. In the end it is you who will make the call of how to proceed.

A "gift" from your cancer experience is a more finely tuned sense of discernment. You've been in situations where you have seen great people doing great things. Whether they have been members of the medical profession or friends and family who have surrounded you, you have seen the best that people can be.

In addition, you are now challenged to continue to make it all about you; which turns into making it about others. You now know what true goodness really is. You've seen examples. You will become another member of the growing list of witnesses and deliverers of goodness to a world that hungers for that goodness.

Maybe, just maybe, you may even find yourself dancing.

She Started It

2010-12-12T13:22:00.002-05:00

Photo source: http://www.bloodyhand.com/

Dear Friend,

Sorry so long since the last part of the letter, but I've been contemplating how to start this segment, and I've been a little self absorbed in other activities (including a one on one bout with my washing machine). As promised, here is the part about how to "torment" the medical professional.

The day after I was admitted the hospital for the first time, my friend Jenny showed up with what I called a "bag of fun." In it were various "items of distraction," including a gel-like bloody hand that you can adhere to a window. As my admittance date was 3 days away from Halloween, the hand was appropriate. We immediately adhered it to the window in my room and watched the reactions on the faces of all who came to visit. The medical assistants, nurses and doctors all shook their heads as if to say, "We got a unique one in this room." However, one of the other items Jenny brought came with a set of instructions. It was a bowl of candy. Her instructions were, "This is nor for you, it's for the medical staff. They need treats." Brilliant! From them on, whenever I spent time in the hospital, there was always a bowl of candy in my room for the staff. I learned it was an easy way to get everybody on the floor to come visit, whether they were assigned to you or not. I think it helped me get some extra special treatment. I even found out where the snacks for patients were located

I carried that same practice over into the clinic whenever I went for chemo treatments. I didn't do it the first time because frankly I was a little preoccupied leading up to that day. One story from that day is when I was introduced to the nurse that was assigned to me for my first treatment. She walked up to me and said, "Mr. Frazee, my name is Laurie and I'll be your nurse today." My immediate response was, "Mr. Frazee is my dad." I said that to let her know that she could call me by my first name (which she now does). However, that is not how she took it. She tells me to this day that I snapped at her when she first introduced herself to me. I've told her it was not my intent to come across that way. Since then, we've "mended fences" and share stories and much laughter.

I think once she (and the rest) saw how I was going to entertain myself during chemo treatments, they knew I was "Greg" and not "Mr. Frazee." Once again, Jenny helped me along with that. At my second treatment, Jenny and I watched the movie, "Arthur." If you don't know the movie, one of Arthur's habits was that he drank....alot. In addition to watching the movie, we had popcorn, lemonade, and.......shot glasses. As we watched the movie, every time Arthur would take a drink, we would pause the movie, pour a shot of lemonade and take a drink. We found it amusing and, frankly, were the only people laughing in the room that day. We did raise the curiosity of the other patients and the staff. We were a little worried about disturbing the others, but we didn't get too boisterous. The next day, one of the staff in the room told me, "We got the biggest kick out of watching you and your friend yesterday. That's what this room needs. She lit up the room."

Following that lead, I contributed St. Patricks Day wigs, a beanie hat with a propeller, humorous buttons from GotCancer.org (including a "special button" for my doctor that read, "My Oncologist Is My Homegirl") and music CD's to the clinic (tell me, have you ever associated salsa music with a chemo treatment room - now you can).

Again, this isn't for the purpose of saying, "How cool is Greg." It goes back to the "It's about you" statement. If you have a sense of humor, cancer doesn't take that away from you. I have yet to hear that someone has been diagnosed with humor cancer. If you are having a hard time finding your sense of humor right now, that's OK. It's in you. It will come back. However, you don't have to get it back on your own.

Maybe you have a friend like Jenny who can help you find it.

"....And So Do His Sisters, And His Cousins, And His Aunts!...." *

2010-12-01T19:51:00.001-05:00

Dear Friend,

I continue. The folks surrounding you that are not medical personnel may struggle with how to talk to you. It will frustrate you. It will frustrate them. Once, I was speaking to the 13 year old daughter of a 40 year old acquaintance. She said, "Dad doesn't get it. He has no clue what is going on with me." I asked her how many times in his life her father had been 40 years old with a 13 year old daughter. "Never," she replied. I then asked how many times in her life she had been 13 years old with a 40 year old father." Again, "Never." I responded, "You both are sorting and working your way through this. Give each other a break."

There, I said it. There are no rules in front of you about the emotional and physical of all this. There are medical guidelines you need to follow as far as letting who know what when you feel pain, fever, nausea, etc. But even those are kind of hard to follow sometimes. You may feel like you need to "tough it out" with some things. Stick to the guidelines. Some physical symptoms can lead to worse symptoms and they can come on quickly. I'm not saying it will happen. Just know you have support with that and take full advantage of that. I will admit I tried to "tough out" some symptoms at various times and fortunately I was in the chemo room when they happened. Talk about attention!

Getting back to the "communication struggle." I once vocalized my concerns about how others were talking to me with my Nurse Practitioner and she explained that I was the one that needed to set the tone for how others talked to me. If they felt my anxiety, they would absorb it. If I spoke in anger, they would respond in anger. It was an early challenge from her, but a well timed one. If I could face that challenge, then it would help me step up to the physical challenge I was facing.

Another communication frustration is when others will want to connect with you by sharing stories of people they know who are going through a cancer journey and all of the bitter details involved. Bless their hearts. I'll insert an anecdote here. Not long after I started treatment, someone approached me and told me a story about how a friend of theirs had been receiving chemo for a cancer diagnosis and then developed a heart ailment. They explained that the heart ailment was attributed to the effects of chemo on their friends' heart. I shook my head and asked, "How is your friend doing now?" Got the answer and then changed the subject.

These folks mean well and that is the only thing they know to say at the time. You may want to tell them, "If that is all you have to say to me, then don't say anything at all." But know this, they are trying to reach out to you and that is a stumble on their part. Your challenge is to be the one to catch them when they stumble. How do you do that? If you are comfortable, share a little of your new knowledge with them. If not, ask them how they are doing. I would sometimes say, "Tell me some stories about what you have been up to." Their eyes and body language will thank you.

Don't get hung up in some of the actual messages. Focus on the care and compassion that is at the root of the message. Once I really started paying attention to that, my stress level diminished and the conversation topics started changing. You can also simply say, "The door is open for ANY questions you may have." That can help take the edge off for you and others. But, only if you are comfortable with it. By being open, you will help take away some of the mystique and inaccurate information that exist about the world of cancer.

Up next, how to "torment" the medical folks and ultimately endear yourself to them.

And now....rest.

*Gilbert and Sullivan

Are You Talkin' To Me? - Part 1

2010-11-29T19:58:00.003-05:00

Dear Newly Diagnosed Cancer Patient,

I am talking (actually writing) to you. Let's get the obvious out of the way first. Your new situation stinks. Really stinks. You are having to process the questions of "What," "How," "Why," "Where," and "When." You have no idea what to do next or who to talk to about what to do next. You've had a lot of information thrown at you in the first 24 hours but all you can retain is, "I have cancer." The fun is only starting.

I wish someone would have handed me a letter in the first 24 hours like the one I am intending to write you. If you are reading this on my blog, it may take a couple days to finish, but I will get to the point.

The very first thing I want to tell you is that you ARE NOT a cancer patient. You may hear that the word "survivor" now applies to you. It is used with the intent of letting you know that you didn't die at diagnosis. You will now have a plan to help you get rid of or keep the cancer in check. But how do you know what to do? How do you decide what to do? You will talk to lots of folks in the next few days. You will meet some great folks. I can tell you that they are in their chosen field so they can help others like yourself. That is what they knew to do when they decided this is what they wanted to do. Talk to them. If you are uncomfortable with them, that's OK. You can tell them so. The very first thing you need to do is to be comfortable with them. Even though you feel like you are placing your life in their hands, it is still your life. Even though you would like to hand over the reins to someone else for now, you can be in control of this. That is why I don't use the word "survivor." I challenge myself and throw and gentle challenge to you to use the word "aliver." With apologies to my regular blog readers, I will repeat that, to me, "aliver" means I am alive, intend to stay alive and by doing so, I can control my current circumstances.

Simply saying it, however, doesn't make it so. You will need to establish how you get there. You will also hear the phrase, "This is entirely about you." It doesn't mean you are attracting attention to yourself. It doesn't mean people now have to bow down to your requests. It simply means that all you have to focus on right now is getting well. The great thing is that you will be surrounded by a group of medical professionals who have the same focus. Your friends and family will also join in. I struggled with that phrase at the outset and some great folks explained to me what it meant. To the medical folks, it meant that if I allowed myself to show up to appointments and talk to them about what is going on with me, physically and emotionally, they would do all in their power to help me get well. To my friends and family, I simply had to tell that what was going on physically and emotionally (either verbally, or in my blog) so they would know what they could do. As the medical folks used their knowledge to treat me, friends and family used their knowledge and intuition to take care of me.

Once, when I vocalized to a friend how uncomfortable I was accepting the kindness of friends and family, she replied, "As the medical folks are treating you with medicine, we need to be able to do these things to administer our own form of medicine to help you get well. We want to be a part of it. So sit down and enjoy the ride." I did. As I look back on those days, I know there were some tough physical and emotional days in there, but the days that stand out, are the days that I knew I was being taken care of. Those were the days when I knew I was resting in the hands of God on earth. Allow yourself those same kind of days. Even though it is because of you that these actions are occurring, your gracious receipt of them makes it about the giver. A sweet Amish lady from South Central Virginia once told me, "A gift not accepted is a blessing denied."

For now, bask in the goodness that is waiting to surround you. Let it drench you. It is good medicine.

Now rest.....(see you soon).

"Would You Be Free From...."

2010-11-18T22:17:00.001-05:00

Had a regularly scheduled checkup with my oncologist today. All is well. Every one of those visits includes a CBC (Complete Blood Count - looking for any abnormalities in the various parts of the blood "recipe."). All of my recent CBC's (say from reaching back to August) indicated that all parts of the blood had returned to "normal." Except for them pesky platelets. They are the last thing to bounce back from extensive chemotherapy treatments. The fact that all of the other parts of my blood "recipe" had returned to normal was a good sign the platelets would follow. Today's platelet count was at the same number they were when I was donating platelets on a regular schedule over 2 years ago and beyond. As a matter of fact, the last two times I ever donated platelets (in August and September of 2008) my counts were just barely above the minimum level the blood donor would accept - significantly lower than my "best" and lower than today's count. This means....further confirmation that the body has healed from the "alien" and from the chemotherapy.

However.....at this point, for me at least, one does turn a sensitive ear to hearing the statistics about the odds of relapse and secondary cancer potential as a result of the treatments. I shared that with my doctor today and her response was, "You are no longer defined by cancer. You were shaped by it. It is no longer part of you. You need to live your life with that knowledge. God forbid, if there is a relapse, or formation of a secondary cancer, we will deal with that when it happens. There are other options that exist if it does. For now, you are doing what you need to do to keep it away or catch it early. That is, coming to us and letting us check on you on a regular schedule. Stick to that."

I knew all of that, but it was good to hear her say it. That's what I have been doing, but only she, another caregiver, or another "aliver" can say it with credibility.

Speaking of credibility, I told her that I have been telling newly diagnosed "alivers" that they should not pay any attention to five year survival rates for their particular cancer. As the treatment options have changed dramatically over time, there is no statistic that is based on an event that occurred five years ago that should apply to someone who is newly diagnosed. She agreed.

Hah, I got that one right!

"There is power, power, wonder working power...." - Lewis E. Jones

Up next, "Saints of Cancer" and "A Letter To A New "Aliver."

Maybe This Instead....

2010-11-15T18:47:00.001-05:00

The man had eyes that smiled. I've only known him for a few short years. When I first started attending church where I now attend, he and his wife sat in the pew in front of me. I didn't get to know them until a year or so after I started attending church there. However, I always enjoyed watching him interact with his grandson. There was an amazing bond between them. I got to know he and his wife after I started my "sabbatical." They reached out to me with kind words, cards and their prayers. Humbling. One thing about him I always noticed (and others that knew him also spoke of it) was when he talked to you, his eyes smiled at you. Last Sunday, as I visited with him in person for the last time (although I didn't know it then), there was a point in our conversation when I said something that elicited a response of "endearment" from him. I busted my gut in laughter. After I wiped the tears of laughter out of my eyes, I looked in his eyes and saw the smile. That is how I will remember him.

"There are accents in the eye which are not on the tongue..."
- Thomas Hardy

"What a wonderful phenomenon it is, carefully considered, when the human eye, that jewel of organic structures, concentrates its moist brilliance on another human creature!" - Thomas Mann

Réquiem aetérnam dona eis Dómine;
et lux perpétua lúceat eis.
Requiéscant in pace.
Amen.

I Like The Room

2010-11-06T20:12:00.004-04:00

I was in this space today while visiting the United States Holocaust Memorial Museum. If you have never been there, you enter this room toward the end of your procession through the museum. I have visited the museum on 2 occasions prior to today and I have always found this room to be a spot in which I spend a few lingering moments just to process what I have just seen. One thing I noticed today was there was very little talking, and if so, it was in low tones, among those in the room.

Two inscriptions on the wall overhead spoke to me today.

Only guard yourself and guard your soul carefully, lest you forget the things your eyes saw, and lest these things depart your heart all the days of your life, and you shall make them known to your children, and to your children's children.

Source: Deuteronomy 4:9

I call heaven and earth to witness this day: I have put before you life and death, blessing and curse. Choose life -- that you and your offspring shall live.

Source: Deuteronomy 30:19

שלום

One Of The Goofy Things

2010-11-05T06:35:00.000-04:00

I was telling someone the other day about the trip to San Diego.

One of the stories from the trip is that Ann Jillian was the mistress of ceremonies for the event. There was a group photo taken that included the three honored nurses, the writers of the essays and Ann Jillian. We were lined up facing to our right and then turning our heads to face the camera. Ann Jillian was standing behind me and I was kidding with her about how we should do a kick line dance. She put her hands on my waist and we started cutting up for a bit. Afterwards, I went up to her to get an autograph for a friend (who named her daughter "Jillian" in honor of Ann Jillian) and after she signed her autograph, she gave me a copy of one of her CD's and then gave me a peck on the cheek. I turned around and walked back to the group I was with - who had witnessed the whole thing. Got some grief from them and told them I would probably never wash that cheek again. Fussed at them because they didn't get a picture of it. Made them swear that they would validate my story if it ever needed validating.

As I tell that story to others, I tell them, "Had you told me 20-30 years ago that some evening in California I would meet Ann Jillian, she would put her hands on my waist and then kiss me, I would have asked what it would take to make that happen."

Ah, the gifts that come from the cancer thing.

I'm just sayin.

The Page At The Very Beginning....

2010-11-04T19:33:00.003-04:00

The very first page of my blog had a picture of the banana trees that I had growing in my yard in 2008. The care of them requires that you dig them up and bring them inside for the winter - otherwise, since they are comprised of a lot of water, they will freeze and die. Ironically, in 2008, I dug them up and brought them inside the day before I was diagnosed. I remember it well. I remember that I didn't feel very well and then I remember struggling with them to bring them in (if they are over 4 feet tall, they are pretty heavy).

Last year, I brought them inside the day I received the news that my scans showed I was cancer free and that I could start resuming all "normal" activities. This year, I brought them in tonight - the 2 year "anniversary" of my first bone marrow biopsy. The picture above shows the shovel I used to dig them up and it is sitting in the hole of one of the banana trees that is now "wintering" in my utility room.

Funny how those anniversaries, memories and connections to occasions work out.

I've mentioned recently about how conversations among cancer patients go and how I have struggled with what is the right thing to say. I've had the opportunity lately to speak as a Patient Honoree for the local chapter of the Leukemia and Lymphoma Society. When I speak, I watch the faces in the crowd and how they react to me. It covers the spectrum. Although I am tempted to "cut loose" with my version of the events, I can tell by the faces that I have to learn to meet the crowd I am talking to where they are emotionally with the cancer thing. Some people may have experienced a recent loss of a friend or family member and it is still fresh in their mind, and painful as a result. They may be there seeking an outlet for their grief and want to honor their friend or family member by raising funds for research. That's awesome of them to do that.

Also in the crowd are former patients who experienced treatments, etc. much more difficult than mine. One thing I do say at every opportunity is that I don't consider myself a survivor. As I have mentioned before, I am using the term "Aliver." When I present that concept, it's pretty cool to watch the look go across the faces in the crowd. Afterwards, usually it's the former cancer patients that will come up to me and tell me that they like the new term. I ask them to continue using it and most of all, continue to live it. Last night, one of the former patients, who is running in a marathon in Vancouver sometime next year, told me she was going to put it on her t-shirt. I like it.

The point of this is not to self promote, but to show people what hope is and what it can do. It's about meeting people where they are and then bringing them to where they can be. I've experienced that from all of my caregivers in the past.

It's a good habit to want to establish for oneself. It's one that I aspire to and have a long way to go. But I think it's a good goal on which to focus.

Even large institutions that are focused on the mission of compassion, care and acceptance struggle with it.

"Let us have but one end in view, the welfare of humanity; and let us put aside all selfishness in consideration of language, nationality, or religion."

(John Comenius,17th century philosopher)

Reminded Of This

2010-11-02T17:54:00.001-04:00

Early this morning I voted. Interestingly enough, the last two elections in which I voted (General Election in 2008 and a Virginia Election in 2009), I was waiting to hear what was still residing in my body. Today was different. That was cool.

But, what I was reminded of today was a conversation I had with some folks from Ireland right after the General Election in 2000. As the case was going on in the Supreme Court, I asked them what their thoughts were on the current activity in America.

I thought they summed it up best.

"It's just like an election in Ireland, except you Americans aren't drinking enough whisky!"

Their words, not mine.

I'm Not Sure, But.....

2010-10-29T20:40:00.003-04:00

I had some really good stuff in my head the other day to post on my blog, but thought I could save it there until tonight. I think I may have forgotten it, but I'll post what I have to say now.

My 2 year "anniversary" has come and gone. Not without observation or reflection. As I have mentioned in the past, the whole process was initiated by 3 coworkers who sat me down in our conference room at work and pleaded with me to go to the emergency room. I gave them all a card last year on the one year anniversary and gave them another one this year. It matters to me to do it and I think it doesn't hurt to remind them of what a magnificent thing they did. Yesterday was the two year anniversary of meeting my oncologist. Ditto. I gave her a humorous anniversary card that spoke to how she and I interact. She, too, needs to be reminded of her accomplishment. I had every intent of leaving it with the receptionist at her office, but the folks there insisted I hand it to her in person. As I spoke to her she said, "You look great!" Told her I should make a sign and hang it on my forehead that reads, "Remission by Dr. ######." She laughed.

I talked to some of the other folks there about my puzzlement about how to interact with other cancer patients in a group setting... TIME OUT! IT ALL COMES BACK TO ME NOW. THIS IS WHAT I WANTED TO SHARE....

When I started the blog, it was about keeping others posted of what was going on. A way to communicate without being on the phone all day. Now, it has become a reflection and introspection device. I'm good with that.

I look back and realize I had a relatively easy time of it physically and mentally. There were times of discomfort, physically and mentally. It blows my mind when those in the know, medically, tell me that I had a pretty aggressive chemotherapy treatment process. Some have labeled it as "the big guns." As I listen to other former patients speak, I have discovered one disconnect I have with them. The ones that react the most emotionally when they tell their stories are the ones who were married and had spouses and/or children. They had to deal with "What happens to them if I die?" I had to face some of that, but I also knew that I wouldn't be leaving anyone behind with whom I shared the same living space.

Early in the process, the Associate Pastor of my church (at the time) came to visit me in the hospital. Since I had recently joined the church, we weren't really all that well acquainted with each other. While visiting me she asked, most sincerely, "How are you doing?" I replied, "Christy, I'm going to be fine. However, if I don't make it, I have the most amazing memorial service already planned." She shook her head and replied, "I hope it doesn't come to that." Inside, I think she was wondering, "How did I draw the short straw to visit this guy?"

So maybe that's it. I didn't have the pressure that others in a different circumstance do. There are times I was grateful that there wasn't someone else who had to share the burden of my "sabbatical", day in and day out. Other times, I wished that there was someone around more often. One of those times was the first couple days after my first chemo treatment. "Should I call the hospital because my temperature seems to be spiking, or should I wait for it to pass?" Another was when I was allowed to be left alone for the first time after being released from MCV. It took a couple of days to be comfortable with it.

However, those who did come in to my life during the whole process were truly messengers and "enlighteners." Because of that experience, I have a new theological belief about how heaven will be established on earth. I like it and I'm comfortable with it.

"Don't you ever doubt it?" Davy asked.
And in fact I have. And perhaps will again. But here is what happens. I look out the window at the red farm--for here we live, Sara and I, in a new house across the meadow, a house built by capable arms and open lungs and joyous sweat. Maybe I see our daughter, home from school, picking plums or apples for Roxanna; maybe one of our sons. reading on the grass or painting an upended canoe. Or maybe Sara comes into the room--my darling Sara--with Mr. Cassidy's beloved rolls on a steaming plate. Then I breathe deeply, and certainty enters into me like light, like a piece of science, and curious music seems to hum inside my fingers.
Is there a single person on whom I can press belief?
No sir.
All I can do is say, Here's how it went. Here's what I saw.
I've been there and am going back.
Make of it what you will."
— Leif Enger

Stay tuned...............

"Oh No He Didn't"

2010-10-22T05:58:00.001-04:00

Recently, at an event I attended along with some other former cancer patients, I was asked to introduce myself and share a little of my story. I decided I would use "my version" of my story in my introduction. As I was last in the group, I heard everyone else's introduction before mine. After hearing some of the other stories, I started second guessing myself about my own introduction. I didn't want to show any disrespect to the others. I went with my original introduction anyway. Here's what I said.

"My name is Greg Frazee and I was diagnosed with Stage IV Non-Hodgkin's Lymphoma 2 years ago. I went through several chemotherapy treatment protocols, including a stem cell transplantation. I have always considered cancer a nemesis because of all of the other people I have known who have been affected by it. One way I fought cancer prior to diagnosis was through the donation of blood platelets, knowing that they would be used for cancer patients. I always wondered if I was doing enough. So, I decided to get a first person experience and I proceeded to get cancer just so I could truly understand what it was like. Here I am."

Some of the folks in the room snickered, some of the others looked at me like my head just fell off my shoulders. I didn't worry about apologizing to anyone. I figure, if you are in the club, you have your own coping mechanism that is unique to you. Humor is mine. I won't apologize for it. I will show empathy to anyone who has been diagnosed with cancer and will do my best to meet them on their level.

However, I'm warning you now. Ask me about my cancer, you will get my response. Maybe not the one you are expecting, but one that is with the intent of making you comfortable.

In my book, cancer affecting others is not funny. Others affected by cancer have my compassion, concern and promise that I will do everything I physically can to help them through their journey.

My cancer...."Thank you. I'll be here all week and make sure to tip your waitress on your way out!"

Not Sure How To Say It

2010-10-16T10:45:00.001-04:00

workingwithothers.com

Been working through how to say something that may need to be said, but maybe I'm not the one to say, or I need to learn how to say it as not to upset anyone, or so that when it is said, it's said with empathy, compassion and encouragement. Kind of like how a certain Nurse Practitioner I know says things to help her patients move through the process.

I'm going to the Richmond Blood Cancer Conference, sponsored by the local chapter of the Leukemia and Lymphoma Society, on November 13. There will be professional caregivers and other patients/survivors/alivers there and I look forward to conversation with all of them.

What is on my mind is how those of us talk to each other when we are assembled. I've spoken to some other folks recently who are currently in treatment and have shared my assessment of the general format of the conversation when you get a bunch of cancer patients (current and former) together in a non support group type setting. That's all I'll say about that.

A friend of mine asked me the other day, "Is there ever a day that goes by that you don't think about that you ever had cancer?" I replied, "I was working on my first day without a cancer thought until you brought it up." I didn't really say that, but I could have and she would have fallen off her chair in hysterics. Wish I would have been quick enough to respond that way at the time, but I didn't.

To me, I guess it's OK to have that thought in your life on a daily basis. People seek the same desire in their spiritual life so that their actions/reactions can be affected by knowing that relationship exists in their life. The same could apply with knowing you've been affected by cancer.

However, where I struggle is with the presentation of the ministry (in both examples).

I'll work on it and get back to you.

"FOUL EVIL SPIRIT..."

2010-10-14T07:44:00.002-04:00

Good stuff from Chile. That news makes me happy and speaks of courage and creativity. Most of all, healing.

I was having dinner with a friend last night and she was telling me about a friend of hers who is undergoing cancer treatments. Her friend is dealing with another form of cancer that is not what she was treated for in the past. It has metastasized into areas of her body and her progress has been slow, challenging and full of setbacks. For the first time since my friend has been keeping me updated, her optimism for her friends recovery is waning.

My friend was telling me that she put a card in the mail to her friend recently, and was distressed because she couldn't think of a special message to write in the card. The only thing she could come up with was signing her name. She felt as if she had let her friend down.

Bear in mind, my friend has constantly kept up on the status of her friend, sent her meals, visited her, etc. However, this one perceived "lack of support" had my friend concerned about not being there for her friend.

Her question to me was, "What should I have done?"

I replied, "You did it."

Once, during the early stages of my experience, I was being kind of bashful about receiving all of the goodness and grace that was being directed to me. I vocalized my concerns to another friend and her response was, "Your friends are unable to supply and direct the medications that are being used for your physical recovery. However, we want to help in some way with your recovery. Please allow us to do what we can." It was such a compassionate and forceful statement, that I didn't have to think twice.

So, to my friend last night, I explained to her that I can't recall specifically what was written in every card and note I received, but I recall that I received cards and when I received them, I knew that the sender(s) of the card was(were) holding me in their thoughts and prayers. That's what mattered most. I told my friend that even though her friends outlook may not be all the positive right now, the card is a moment of healing. It may not be the ultimate cure, but it creates a moment in her friends life when her friend will receive a drenching of compassion and care. Trust me, from this side of it, it's a big deal.

I also told her, "If you don't know what to write in there, but you want to write something, find an inspirational quote, or even a joke. online. But know, when that card is received, it will never been perceived as something perfunctory."

You see, even on the medical side of my experience, there wasn't one single treatment moment or event that advanced me through the process, it was the combination of all of the moments.

Another Trip

2010-10-04T06:27:00.013-04:00

I took this picture on Saturday somewhere near Cuzzart WV (look it up on Google Maps). Was on my way to the Preston County Buckwheat Festival in Kingwood WV. Apparently, this is the route we used to take to the Festival from our house near Friendsville MD before Interstate 68 was constructed. I wanted to take a trip down memory lane (which used to be a dirt road).

Went to the Buckwheat Festival because...why wouldn't you?....as it was the last "trip home" I made before I was diagnosed two years ago. It's good therapy to "check off" some of the things to do that I couldn't do for awhile.

What's next you ask (even if you didn't)? Some new things....going to get a portrait taken with Annette for inclusion in a book of all of the essays submitted for the Extraordinary Healer contest sponsored by CURE Magazine. Looking forward to it because the good folks at CURE Magazine have hired a professional photographer...so it should be good. Also, next week I will be attending a training session given by the local Leukemia and Lymphoma Society chapter to be trained as a "First Connection" resource.

On The TV Show...

2010-09-30T20:00:00.004-04:00

..."Survivor," (which I don't watch), it's all about making it through challenges, tests, etc. to be the final one standing and to collect money.

Watched it once, I'm over it.

The word "survivor" has a different connotation to me these days. It's used to describe those who have been diagnosed, treated for cancer and are still living. It is often applied to an individual the minute they are diagnosed with cancer.

At Merriam-Webster.com, the word "survive" is defined as, "to continue to function or prosper."

I had a conversation with a breast cancer survivor a few weeks ago and she said, "I've never been real comfortable with the word 'survivor' as it applies to me. I don't think it describes me." I asked her why and she replied (and I paraphrase), "To me it implies that I'm just getting along. Nothing more."

I told her that I agreed. I told her that to me, it means that something has picked on me, was (is) in control of my actions, comings and goings, and I have to alter my life to accommodate that it was (is) in my life. NOTE: I'm putting the word "is" in parentheses because even though there are NO physical symptoms of cancer in my body at this point, I currently have to engage in certain activities (check ups, blood work, scans, etc.) for the next 4 years because there were physical realities of cancer in my body. Those activities define "is."

However, if "is" was how I defined myself, I would be a survivor. I would be "continuing to function" in spite of that what once was.

I am functioning, but there is more. That's why, when I presented at Camp Phoenix the other week, I introduced a supplement to the word survivor. To the other folks there, I suggested we call ourselves "alivers." To me it means that we are in control of that which is not normal that is residing in us. We are the ones making the choices being presented to us. It's empowering us to have the courage to engage in the difficult discussions with caregivers and those we ask to help in our decision process. It says that as a result of being in control, our discussions with our caregivers are open, complete and not over until we have accessed all of the information that is available. By being in control, our discussions with others, who are going through the process with us, are not adversarial, but are informative and productive.

Before I spoke to the two groups the other week, I asked my oncologist for her input on what I should say. She said, "Tell them your story and also tell them that if they aren't comfortable with anyone on their medical team, it's OK to speak up and say so." I respect her for many things and that statement is one of them. She gets it. She not only wants to treat and hopefully cure her patients, she wants them to be alive.

I told the folks at Camp Phoenix several stories about how I "misbehaved" during my treatments and other interactions with caregivers. I didn't consciously decide to do all of those things, they happened. The survival instinct in us says, "Show up." The "aliver" instinct says, "Show up to the party."

With that, I'll leave you with this. I saw it performed as part of a production entitled, "Blast," at The Kennedy Center several years ago. It makes me feel alive to watch it. Watch it. Be alive.

Looking Back

2010-09-27T06:29:00.000-04:00

The reason I am posting this picture is that I am connected to this structure. It is the house (we refer to it as "the shanty") my family was living in when I was born. I took this picture about 15 years ago. I did not recall it as we moved into another house when I was pretty young sometime in the early 1960's.

When I took this picture, it was the first time I ever really "saw" this house. You can not see it from the road as it sits back in the woods about a quarter mile or so off of the road.

Thought you may find it interesting. Looks like it has had some additions built onto it during its life, so I don't really know how much of it was there when we lived there.

All That Coolness In One Place

2010-09-15T17:40:00.003-04:00


Photo credit: http://www.floridabugs.com/images/spiders/daddy_long_legs_lrg.jpg

I saw one of these in my car today and was reminded of a game we used to play as kids when we would encounter one of these. Because I grew up on a farm, we would pick them up, hold them by one of their legs and ask them, "Which way are the cows?" Miraculously, they would point to the exact location of the cows and then we would let it go. OK, sometimes, we would remove their legs - but we were kids - we were goofy that way.

Had I asked the one I saw today, "Which way is something cool going to happen?", it may have pointed in the direction of Mechanicsville VA. Saturday, is the Camp Phoenix event that I will be attending.

Here is the official press release of the event:

September 1, 2010
Hanover County, VA

Camp Phoenix is a yearly weekend retreat for adult cancer patients and their caregivers that was envisioned, developed, and organized by the members of the Richmond Chapter of the Oncology Nursing Society in 1996. The retreat is a grassroots effort by the nurses of the ONS chapter, and was founded by Kathy Barksdale, NP, OCN, and Pam Miller, NP, AOCNP who recognized the need for respite in their patients.

Camp Phoenix is designed to be a relaxing, rejuvenating, and fun retreat that cancer patients can share together along with the ONS nurses who volunteer their time and money to keep the retreat going at minimal cost to the cancer survivors. The camp is organized and staffed by oncology nurses.

This year, Camp Phoenix has lost much of its outside financial support due to the economic recession. As a result, it will be a one-day event, despite efforts by the Richmond ONS nurses to raise adequate funds for a full weekend. “It really hurts the full benefit of Camp Phoenix to have only one day for the survivors to participate”, says Derryel. Johnson, RN, OCN, an oncology nurse for 24 years, and the retreat’s co-chairperson. At Camp Phoenix, cancer survivors can share their triumphs and challenges, have fun, and just relax together in a supportive environment. This is the second year that it will only be a one-day event. The date of the camp will be Saturday, September 18, from 9 AM to 6:30 PM.

The keynote speaker for this year is Mr. Greg Frazee, of Richmond, a cancer “aliver”, as he would like to be known. Tricia Cox, NP, AOCNP, will also present on the topic of survivorship. The day will be full of activities and educational presentations at its usual venue “Camp Hanover”.

Camp Phoenix has been pivotal in providing an outlet for stress and uncertainty in the lives of cancer survivors. Please help the Richmond ONS oncology nurses keep this wonderful event going!

Camp Phoenix is a 501©6 non-profit organization.
For donations and further information regarding Camp Phoenix contact Derryel Johnson at lyvonnern@aol.com or Betty McGarry RN, MSN, at bcm2b@earthlink.net, or Annette Graham at agraham@vacancer.com.

Here's something I'm also excited about in connection with Camp Phoenix. Two people, who were very instrumental in keeping my head on straight throughout the entire process, will meet for the very first time on Saturday. I'm speaking of Annette Graham and Judy Davis (who was my pre-transplant coordinator at MCV). I can't wait for them to meet. I may spend the entire day watching them interact.

I sense it is going to be a great day for everyone.

"Had I known......"

An Offering

2010-09-14T18:00:00.005-04:00

I offered this excerpt, (with my "spin" put on it) from the New Testament book of Revelation 21:1-4, to the folks I talked to on Sunday.

Then I saw a new heaven and a new earth. The former heaven and the former earth had passed away, and the sea (C - as in "cancer") was no more. I also saw the holy city (an oncologist, an oncology nurse, and a medical assistant), a new Jerusalem, coming down out of heaven from God (coming into the exam room), prepared as a bride adorned for her husband (prepared with treatment medications and recommendations for healing). I heard a loud voice (voice of assurance) from the throne saying, "Behold, God's dwelling is with the human race (in the form of research, cures, scientists, medical professionals and caregivers). He will dwell with them and they will be his people and God himself will always be with them (as their God).He will wipe every tear from their eyes, and there shall be no more death or mourning, wailing or pain, (for) the old order has passed away."

That's what I've seen.....and continue to see.....

"Alright somethin's happening
Hold tight it might be lightning
Turn up the lights I feel like dancing
Can't sleep at night my heart keeps missing a beat" - Peter Frampton

Alternatives

2010-09-11T08:28:00.003-04:00

I was at the University of Maryland Home and Garden Information Center on Wednesday and was "introduced" to the bug in the picture by Jon Traunfeld. The bug is a "Wheel Bug." I learned that in spite of their appearance, they are beneficial as they like to feast on agricultural pests such as Japanese Beetles. Jon told me "If you had a garden full of these, you wouldn't need to use any pesticides."

Which naturally leads me to last nights' presentation of "Stand Up To Cancer." Good concept. Great stuff. I like that they are supporting an initiative to gather together leading researchers to pool their resources and collectively find solutions to halt cancer in its' tracks. I hope it works.

However, I could have done without the drama. I wasn't crazy about the opening sequence. If you didn't see it, the opening sequence was an assortment of celebrities reciting the line, "Cancer doesn't care....." I agree. However, it was a bit dramatic for my taste. Just my opinion.

Later on, Brian Williams made the comment, "Someone once said, chemotherapy is like using a nuclear bomb on a house when you want to turn the lights off in the kitchen." I cringed when I heard that.

I agree that chemotherapy is somewhat of a "nuclear option." But at least it is an option. My perception of chemotherapy now, vs. before I received it as treatment, is different. You must know that before chemotherapy is administered as an option for treatment, the patient is tested to determine their physical ability to receive and bounce back from any form of chemotherapy treatment. It is not administered indiscriminately or randomly. As I have said before on this blog and in person, I am curious to know whether the volume of chemotherapy drugs was equal to the volume of drugs that were given to me to counteract my bodys' reaction to the chemotherapy drugs. That's how far the research has come since the first days of chemotherapy treatment. There are people alive now because of receiving chemotherapy treatments.

I asked my doctor for her insight and wisdom about what to say when I speak at the upcoming events. She replied, "Tell them they need to be comfortable with their doctors and nurses. If they aren't. then it's OK to speak up and say so." I thought those were good words from her. It points out that from day one, the individual who has been diagnosed may feel attacked and vulnerable, but ultimately, the patient is in control of the situation. The cancer doesn't own you. It may change you. But....you own it. It's in your body. It is not natural for it to be there.

Not to say there aren't better treatment options out there; such as using the bodys' natural defense system to fight cancer. I'm excited about that option and I believe it will be standard treatment someday. That is the importance of funding continuing research and that is what "Stand Up To Cancer" is about. However, there is no point in scaring people away from the current treatment methods if those methods are their best option.

Frankly, when I first saw the wheel bug the other day, I wanted to stomp on it because, based on its' appearance, I assumed it was just another worthless critter.

Benediction To Yesterday

2010-09-07T06:44:00.000-04:00

This morning while walking, I looked at the stars through a sky that was unfiltered by humidity.

Saturday, I glimpsed at one of my favorite views of Washington DC. It is the view of the city from the crest on I-395 above the Pentagon. From that vantage, when the air is clear, you can see the entire city from well north of the National Cathedral, to beyond Fed Ex Field in the east, and "far beyond where the horizon lies" in any direction.

I recall the faces of the doctors, nurses and caregivers that I experienced over the last two years.

That is the song I sing.

Where I Am And Where I Am Going

2010-09-06T07:49:00.001-04:00

I was talking to the pastor of my church yesterday after the service (after I walked out during the sermon.....I am dealing with some allergies and felt a coughing fit coming on that could be a bit disruptive.....so I excused myself, mid-sermon, and went outside to cough it out, get some cough drops, etc.) and was picking his brain on my upcoming talks. I asked him for some theological guidance and clarification on what I was going to talk about next Sunday. I told him I think there are things in front of us that we can see but can not see.

This is a link to what I am talking about. I am grateful that I have been led to a church that is a significant part of this.

This, however, is not what I see. I pray it is one of those things that the design of the universe will overcome. A friend of mine uses the term "religious bigotry" to describe these type of organizations.

The Translation Is This...

2010-09-03T16:19:00.000-04:00

Several readers contacted me about the anxiety mentioned the other day. The source of that anxiety is gone. I brought the source into my life and I dealt with it. When I brought the source of anxiety into my life, I knew then I was taking a risk, but I put protections in place to allow myself to push it away and remove it from my life if needed. Even though it was overwhelming at times, I was in control of it. I knew that it was an unnatural event in my life and I knew that by the design of nature, it would be gone eventually. I was right.

That's what I learned from the cancer experience. You are in control at all times. That capacity exists within the human form. I once heard a pastor say, " God will complete his work through us and in spite of us." I have been critiqued for not being more out there about my spiritual beliefs and how they served me while going through the cancer experience. The source of my anxiety, mentioned in the previous paragraph, was very vocal and demonstrative in the practice of his spirituality. He is permitted to be. However, he did it in a way that turned people away. I once told him, "Sometimes, the demonstration of your faith needs to be experienced by others, rather than shouting it at them." In the end, I knew from experience that all would be well. I am at peace with my understanding of the order of the universe. I'm not saying that all things will turn out how you want them because you have a strong belief system. I'm saying that something ain't right, it won't continue to exist. That's my belief. Cancer ain't right. It still exists. Because others in the past believed cancer was not natural, they chose treatment, they chose to administer treatment, they chose to research treatment and we benefit from their decisions. I like to think that because of my decisions regarding treatment, others in the future will benefit from even more advanced treatment options.

In relation to yesterdays excerpt from "Peace Like A River," by Leif Enger, what I will be going back to is my cancer experience. I have been invited by a church in Harrisonburg VA, of which I was a former member, to speak to their combined Sunday School Class next week on September 12. They have asked me to share my experience and I will also tell them specifically how my faith background played a part in my reaction and actions. Some of them may not agree with some things I share. That's OK. That's the point of community gatherings; to exchange and share ideas.

In addition, I will be speaking at an event sponsored by the Richmond VA Oncology Nursing Society on September 18. The group will be made up of cancer patients, survivors (stay tuned for my take on the use of that word) and their caregivers. It will be a lighthearted romp through my cancer experience and what conclusions I have arrived at as a result of my approach to my diagnosis and course of treatment.

I will continually go back to my cancer experience (and other life experiences) as I sculpt my responses to future life experiences. I won't need to apologize to anyone if I make an incorrect decision that doesn't harm anyone but myself. I won't listen to unsolicited advice, but I will welcome your input if I engage you in a conversation.

I will continually give thanks for you because you read the blog and because you are most sincere in your demonstration of care for and about me. Because you are reading this, you are part of the group whose care I experienced.

To reconstruct a phrase often recited by Daniel Lawrence Whitney , "I don't care who you are, that's good stuff right there."

Second Act

2010-09-02T19:38:00.002-04:00

“I breathe deeply, and certainty enters into me like light, like a piece of science, and curious music seems to hum inside my fingers.

Is there a single person on whom I can press belief?

No sir.

All I can do is say, Here’s how it went. Here’s what I saw.

I’ve been there and am going back.

Make of it what you will.” - Leif Enger, "Peace Like A River"

Stay Tuned.............(but don't fret)

Now That's Odd

2010-09-01T08:38:00.006-04:00

Photo: http://www.sitcomsonline.com/photopost/showphoto.php/photo/134011/cat/779

I was reading a friend's blog just now and for no apparent reason while I was reading their blog, I recalled the smell of horse breath. It's not a smell that puts me off, rather, it's a smell that has excitement associated with it. When I've smelled it in the past, it meant that I was about to get on a horse and ride. The last horse I rode was in a snow covered woods in the Poconos sometime in the late 80's. The last time I was around a horse and actually touched it was a few years ago in North Carolina.

How to connect that recollection with my experiences shared in this blog, may seem to be a bit of a stretch. Not really. It's not as obvious as "You need to get back on the horse again, Greg," or anything like that. I think it's about knowing there is excitement ahead. What that excitement is, I have no clue.

It hasn't been all blissful days since the diagnosis, treatment and receiving the "all clear." It wouldn't be even if there hadn't been a life changing event in my recent history. However, I think that once you get the all clear, there can be an assumption that all is well and will be well after you come out the other side. Not true.

I've shared some of my challenges with folks in person and I don't feel like posting them here. I will tell you, the challenges have been unique, sometimes frightening, but never, I say never, have I felt like they can't be overcome. Once you've been through the biggest challenge you will ever have to face, your perspective on lesser challenges changes.

What if I have to face an even larger challenge later on? I have no clue how I'll react. That includes the decision I would have to make if there was a relapse, or another form of cancer that develops from the result of having the treatments I had.

That will be my decision to make. I may approach others for their input, but I will have the final say on the matter. I may make a mistake in doing so.

None of what I share with you is with the intent of bracing you for some pending medical news. I have been open with my diagnosis, treatments, etc. to now and will remain so. There are people in this world with whom I will not share details if they are not smart enough to find or haven't been directed to this blog.

Nope, what this post about is purging some anxiety that has been building. I will tell you that a huge part of that anxiety will be gone today. Those who have spoken directly to me know of what I speak. If you don't know me personally, trust me, it's not that important and it's not cancer related, even though it is a cancer of sorts.

Giddyup

Waiting For The Weight Of The World

2010-08-25T18:50:00.000-04:00

Bo's scans came back clear today, so he is good to go. One year cancer free for him! If you have a moment, read the post from today. Some good information in there about banking umbilical cord stem cells.

Skippy is home from Iraq and on Commonwealth of Virginia soil. Thanks to Skippy and all like him that represent our country well in a tough environment.

Got the final stamp of OK from the MCV folks yesterday. Actually met with the head of the Bone Marrow Transplant Unit. Great guy. We had a good discussion about my health and about what I've been up to. Funny story, in his follow up questioning, he went through a check list of symptoms and actually blindsided me with a question I hadn't heard before in the course of this process. I was proud that I had a snappy reply. I won't share any of it here. May not share it in polite company...ever. But, I thought it was funny and I'm sure he told the story of it to his colleagues. If he didn't, I'm disappointed in him. He shared some what he called "dark cancer humor" with me. I was flattered he was comfortable enough to do that.

Told him about my speaking gigs coming up and asked for his thoughts. I told him the direction I wanted to head with it and he thought it was a good concept. Told him I have a new take on the use of the word "survivor" in relation to being diagnosed with cancer.

He shared these thoughts with me, and I paraphrase...."Cancer patients do like to tell war stories and we recognize that. That's why the waiting room can be an anxious place for new patients. They sit there and hear other patients sharing some of the tougher things they went through and the new patient gets concerned as a result. We have to figure out a way to keep that minimized or to keep it from happening at all."

As I started to type this paragraph, I just came up with an idea in relation to the previous paragraph. I'll get back to you on it. I want to ask some folks what they think.

Maybe what we are looking and waiting for is already here, and it is us.

From The Land Of "Real" Barbecue

2010-08-20T19:57:00.001-04:00

I'm talking Eastern North Carolina...

The following is a Facebook post from Hunter's mother:

"We are home with great news from the doctor! Our sweet little man remains "Cancer Free"! You can't even imagine how amazing that feels! I am so grateful for each and every minute that I get to spend with our son ....life and health is such a precious gift! Thank you all for you support, prayers and love! God's listening!"

I'll Give It A Shot

2010-08-19T19:54:00.003-04:00

Versus getting a shot (or having a shot - which is what I'm sure my doctor needs after meeting with me).

Anyway, today is the one year anniversary of being taken off of "24 hour watch." How do I remember this stuff? I look back into the blog to see what was going on at any given time. This day last year, I was allowed to be alone in my house without having someone here to keep an eye on me.

Speaking of good events, long time follower of this blog, Skippy, is officially out of Iraq and is on his way home. Safe travel to Skippy.

Hunter in North Carolina is doing well, but his next set of scans is tomorrow (Friday, the 20th). Bo's next set of scans is next week (the 26th).

Coincidentally, today I met with my doctor for my 3 month check up with her. She walked in and said, "All is normal and I use that term to describe only your physical condition." She's a crack up. Truly a soul that I enjoy seeing. Sometimes I get separation anxiety when I know that I'm not going to see her and the other folks for a couple of months. I guess it's kind of like the Brett Favre thing. We were all brought together for an intense experience in which we bonded and now we need to move on with the rest of our lives. Doesn't mean we need to be separated, it's just that we won't be around each other as much (insert commentary here: As a Green Bay Packer fan, it doesn't mean I have to appreciate Brett Favre's actions, but rather, I understand a little bit of what is going on in his head.).

I asked her some questions about stuff and got good answers, but it was the first time I didn't take a sheet of written questions into the appointment. For that, she was grateful.

I told her that I would be speaking at a Cancer Survivor event in mid-September. I asked her this question (and I would also like your input), "What is the one thing I MUST say to the folks I'm talking to on that day?" She offered some great input.

I do have some ideas of my own, but I'd like your input. To be honest, sometimes survivors telling stories about their experience can get a little maudlin. I understand. It's a big deal. However, that's not me.

But.....I'm willing to listen to what you have to say.

State Of My Gizzard

2010-08-17T18:00:00.006-04:00

I reckon my doctor will give the official word on that when I see her on Thursday. There is nothing to date to indicate any concern. And since I really don't have a gizzard (nor will I ever eat them), there's another reason not to be concerned.

However, there is something that is getting my figurative gizzard. Currently, there are a lot of voices speaking and, of course, they all have something to say. I'm guilty as charged as I use my blog to say stuff. However, my stuff is legitimate and without fault. Really.

Some of the things said, I agree with. Some, I don't. However, there are things said that contain loose facts. "Facts" that are geographically, politically, scientifically, theologically, traditionally, morally, environmentally, "etc., etc. and so forth" incorrect.

To those who spew them with the intent to impose your beliefs, stop it until you check your facts. You are the same people feigning concern about the outcome of the economy and the future of your homeland and yet you spend your energy and cause others to redirect theirs to the insignificant "issues of the day." The 24 hours news cycle is a blessing and a curse.

My wish and prayer is that you focus your energy in the same direction and with the same dedication to humanity like those I have met since October 2008. Would you rather be remembered for tearing something down or for building something up?

"You may say that I'm a dreamer, but I'm not the only one." - John Lennon

"I saw a new heaven and a new earth." - another guy named John

I Kid You Not

2010-08-14T07:47:00.001-04:00

The recent daily average of hits to my blog is usually around 15.

Yesterday, it was over 160. I have learned that without a calendar, I can tell when a Friday the 13th is approaching because of the searches for "Friday the 13th jokes" that land on my blog. I posted this on Friday, February 13, 2009. Just thought I'd share that bit of internet information with you.

Speaking of information found on the internet. I received this as part of a pharmaceutical news update. Great stuff!

Nothing medical to report for me. I have a regularly scheduled visit with the oncologist next Thursday (the 19th) and a one year follow up visit to MCV on the 24th.

How It Should Have Been Said

2010-08-12T20:11:00.001-04:00

Last Sunday, the Bone Marrow Transplant Unit at VCU Health Systems (MCV to us Richmonders) hosted an Inaugural Celebration Event commemorating the success of the program over the years. Patients, their family, friends and other caregivers were invited. It was a great event and there was lots of good information presented by the staff.

One of the segments of the program was hosted by the Pre-Transplant coordinator that worked with me and tolerated me, and the other host was one of the clinic nurses who also tolerated me. In the segment, they invited former patients to share their own personal remembrances. I was invited to share my story and I know I stumbled, but this is how I wish it would have come out. Here goes:

A few weeks prior to being admitted to the Bone Marrow Unit for my final chemotherapy treatment and stem cell "rescue," I awoke in the middle of the night and was processing my anxiety about what lay ahead. As I laid there, an image came into my mind. In that image, I could see the buildings of the hospital complex and they were surrounded by dark, ominous clouds. I heard the words, "Something bad is going to happen there." I knew that the image was a manifestation of my anxiety and I let myself go back to sleep.

When I began the process of collecting my stem cells a few weeks later, I met an amazing group of medical professionals in the apheresis lab who made me feel comfortable on day 1. They listened to my anxiety and offered some professional insights. We connected immediately.

During that time, I was also interacting with staff (pre-transplant coordinators, social workers, dietitians, financial coordinators) who were responsible for preparing me to take the next step in the process. It involved the presentation of "the facts" of what was ahead. All of it was presented with the perfect blend of clarity, compassion and humor.

The food service staff, always cheerful and smiling, were always sure I had the correct menu choices and that they were on time for every meal. In fact, their chicken salad sandwiches and bacon for breakfast are 4 stars in my book.

I was grateful for the cleaning folks who meticulously cleaned my room and removed my dirty linens on a daily basis.

The nurses and care partners....who did the heavy lifting, never missed a beat as far as checking on me and administering treatment. They were there when I had reactions to medications. Most importantly, they tolerated and sometimes encouraged what I called "humor."

The doctors, physician assistants and nurse practitioners were always willing to examine, listen and follow up on any concerns I had regarding my status.

After my release as an inpatient, the clinic staff greeted me warmly upon arrival, the nursing staff would care for me during visits and engaged in the "guess today's blood counts" game that we created; never letting me leave the clinic until they were positive that all of my counts and necessary supplements were verified and met the required standards.

In the shadows, but a critical cog, is the clinical research staff. Without their efforts, my treatments would not have been "standard" or even known. In fact, MCV was one of the primary clinical research locations for one of the drugs used to mobilize my stem cells out of my bone marrow. Interestingly enough, that drug did not gain FDA approval until 2 months after I was diagnosed in October 2008.

As I look back and remember, I don't see the image I mentioned earlier. I can't see an image at all. But, I can tell you, that while I was there, I got a glimpse into heaven.

The Evidence Of Things Not Seen

2010-08-10T17:28:00.004-04:00

For those of you who chose not to see a picture of my actual bone marrow last week (there was one taker), had you seen the picture, all you would have seen was ordinary bone marrow. I received a call today from Annette telling me that some of the initial results are back and there is no sign of cancer in my bone marrow at this point.

In addition, the initial results from my pulmonary function test that was administered yesterday is that my lungs are functioning fine. For the type of chemotherapy treatment that was administered to me, the development of pulmonary fibrosis can occur down the road. That's why the pulmonary function test is part of the follow up regimen.

So...here we are.....

"I've never wondered if I was afraid
When there was a challenge to take
I never thought about how much I weighed
When there was still one piece of cake
Maybe it's meant the hours I've spent
Feeling broken and bent and unwell
But there's still no cure more heaven-sent
As the chance to raise some hell

Oh, it's time to start livin'
Time to take a little from this world we're given
Time to take time, cause spring will turn to fall
In just no time at all.. .." - ARTIST: Stephen Schwartz

If you read this far, here's a link to Irene Ryan ("Granny" from "The Beverly Hillbillies") singing the song.

That Was Quick

2010-08-02T18:18:00.004-04:00

Bone Marrow Biopsy #4 - Done. Pain and Discomfort - minimal. As a matter of fact, I found this information today: "...we ran questionnaires on 44 consecutive patients undergoing marrow draws (primarily in Jan-Feb 2009). 86% said they had no to mild discomfort. 88% said that the procedure was either less uncomfortable or about what they thought it would be. 88% also said they would do it again without hesitation."
Source: Regenexx

Cool news from today is that Annette called later on in the afternoon and said, "Your CT scan results are back and I wanted to call you and let you know that the alien has shrunk some more. He is now approximately 3" x 3" (she used centimeters when she called, but I converted it)." That means, the alien is about half the size it was when I was diagnosed. She continued with, "What this means is that the alien is most likely dead. It will continue to shrink as you go through life (would be great if the same happened to my waistline). It won't totally disappear, but it will decrease over time. I just wanted to call you and let you know so you would have one less thing to worry about." Ain't that somethin?

Of the testing, all that is left is the Pulmonary Function Test this Friday. Then, a follow up visit with the doctor on August 19 and then probably another regular doctor visit sometime in the fall.

Oh, I took my camera to the appointment today and took a picture of the bone marrow sample after it was extracted. I was going to post it to the blog, but it's sitting in the middle of some blood on a slide, so I thought I'd save you from seeing it. If you would like to see a picture of it, post a comment below and your e-mail address and I will send you a copy. It looks like a miniature gelatinous sausage (prior to cooking, of course).

That's all I got.

If There Was An SAT Type Test For All This..

2010-07-30T18:18:00.003-04:00

...I'd be nowhere near the level of knowledge I needed to be.

Thought I had this CT thing down. The cool thing that started the day was that in the past I had to drink one of the bottles of "banana smoothie" 2 hours before the test and then the other one needed to be finished a half hour or so before the test. They changed the rules (because patients were getting confused about the timing of the whole process) and this time I drank them both at the same time - 2 hours before the test. That worked for me. Not a real bad taste sensation and I thought I noticed a little "bite" in the aftertaste that made it seem like it had a little "adult preservative" in it and that I should be drinking it sometime after 5PM rather than 6AM.

The thing I learned today was that they needed for me to have recent lab work that included my BUN/Creatinine numbers. As the last test I had that contained that information was May 20, they had to take a blood sample from me prior to administering the CT scan. Needless to say, I wasn't In and Out as quick as I had scheduled.

No complaints. Just notes to self to make sure I'm aware of these details prior to the next scan - which won't be until February. As I was wondering why this had not been an issue before, I remembered (but had forgotten) that I needed to have lab work prior to a previous CT scan, but didn't question the logistics of it before. Next time, I'll know to coordinate that with my doctor's office or the scanning folks prior to the appt. I also realized that the reason it was never an issue until recently is that my blood work was continually being monitored from day 1, so all of my information was pretty up to date. The fact that it isn't up to date now is a sign of recovery and being well.

I'll still carry anxiety with me for a week or so until the doctor and I meet on the 19th of August to review everything, but I won't let it weigh me down.

Oh wait...here's something else I learned today. When the technician drew my blood, we were discussing needles and how the needle that stung me the most since day one of my diagnosis was the needle that was used to inject my H1N1 shot. I told the technician that the individual who administered the shot told me that most likely there were some burrs on the needle after he inserted it into the vaccine bottle and that is why it felt the way it did. The technician said, "That's why he should have replaced the needle after he drew the vaccine into the syringe. He's right, the needle tip is compromised when it pierces the vaccine bottle membrane. Most people will not use the same needle for administering that they used for withdrawl."

Guess who is going to keep his eyes open for that in the future.............

"...It Isn't Every Day, Good Fortune Comes Me Way..." *

2010-07-23T06:26:00.003-04:00

Here's how to celebrate today's event

Photo image: Unilever

Here's the birthday card

"On behalf of all the people who have assembled here

I would merely like to mention, if I may

That our unanimous attitude

Is one of lasting gratitude

For what our friend has done for us today

And therefore I would simply like to say :

 

Thank you very much

Thank you very much

That's the nicest thing that anyone's ever done for me

I may sound double Dutch

But my delight is such

I feel as if a losing war's been won for me

 

And if I had a flag, I'd hang me flag out

To let us all the final victory touch

But since I left me flag at home

I simply have to say :

Thank you very, very, very much

Thank you very, very, very much" *

 *Leslie Bricusse

"Make Me Smile"

2010-07-22T18:00:00.004-04:00

This article was posted on an e-newsletter that I received from the Massey Cancer Center in Richmond VA.

Great article. I have never met the patient the article speaks about, but Dr. Toor was my primary doctor when I was there and I was visited regularly by the other two doctors that are mentioned. In addition, I suspect I know who the Nurse Practitioner is that was quoted in the article and he is also a credit to his profession. If he is one and the same, a story I have about him is that he was my nurse a few times while I was there as he volunteered to fill in during some days when they were short staffed.

And of course, the nursing staff. The heavy lifters and the compassion givers.

Another group that can go unnoticed is the support staff. I'm speaking of pre-transplant coordinators, the counselors, the administrative staff and the folks in clinical research. If they didn't do what they do (and do it as well as they do), it would be rough going for all (doctors, nurses and patients) who rely on their efforts.

For everyone in the process, I give thanks for who they are and what they do. I'm proud of them.

The stories I could tell you about all of the folks I encountered.

If you ask, I will.

"I Was Standing There On Capitol Hill"*

2010-07-21T16:09:00.014-04:00

*With apologies to Dave Frishberg.

Today is the one year anniversary of my last chemotherapy infusion. Somewhere around the very hour that I am typing this, was the "unhanging of the last bag." This Friday is the one year anniversary of the return of my stem cells. Some of the folks in the business call it "your other birthday."

Next week (Friday, the 30th) starts the next round of tests, scans, etc. as part of the 5 year plan. Not a lot of anxiety about it, however since the CT scan is on the 30th, I will be a little edgy about waiting for a call from the doctor's office saying as a result of the CT scans, they want me to have a PET scan. That call would indicate there is something in the CT scan that concerns them. If I don't receive that call within a week, we could be clear sailing.

The following Monday (August 2) is a bone marrow biopsy. The good news (for Annette) is that I have nothing diabolical planned for that appt.

Last night, I attended a Breakaway From Cancer event at the Rayburn House Office Building on Capitol Hill in DC. I was invited by the good folks at National Coalition for Cancer Survivorship. I drew an arrow on the photo pinpointing the approximate location where the event was held.

There were a couple of folks there from Congress. The purpose of the event was to highlight the needs of cancer patients and the tools and resources that the folks who sponsored the event provide to those affected by cancer. There is a wealth of great information available through the organizations involved and the discussion I had with some of the folks present, including survivors, was how to get that information out there at the right time.

One of the survivors described her experience upon receiving her diagnosis as going into a tunnel and feeling the weight of the diagnosis envelop her. For some time, the ability to think rationally escaped her.

I remember that I shut down from wanting to absorb any input about my diagnosis unless it came from a doctor or nurse. I allowed no one to have any credibility that wasn't a part of the medical team. There is only so much you can absorb at the outset.

That's why I think it is important to get previous patients connected with newly diagnosed patients as soon as possible. It doesn't have to be a mandatory thing, but it could be a question that is asked by the medical team ("Would you like to talk to someone who has been through what you are facing?") or by the patient themselves ("Is there someone I can talk to who has been through what I am about to go through?"). Support groups are a good source, but not everyone (myself included) feels like interacting with a large group during the process. I will never forget the kindness of a gentleman from Williamsburg VA who I spoke to before I did my stem cell transplantation. He had been through the procedure and he spoke openly and honestly to me about the process. He also offered encouragement.

I will be working with the Leukemia and Lymphoma Society to be trained as a volunteer "First Connection" resource. Honestly, I wasn't aware of this resource when I was diagnosed. It's the fault of no one, but the various agencies are aware that the information they have doesn't get into the hands of the patient or caregiver at the most opportune time. They are working on how to correct that.

I think to be successful in getting the word out, the effort has to be grass roots and word of mouth. As a result of a personal connection via friends or family of someone who has been newly diagnosed with cancer, I have talked, and am willing to talk, to both patients and caregivers as they go through the journey. I'd like to think I have been able to help.

If you have not personally experienced cancer, but are sharing the road with someone who is going through the cancer experience, the best thing you can do is not to offer advice, horror stories or medical assessments. All you have to do is listen and offer help for what you hear are the needs of the patient. It can be a trial and error process and it won't always be graceful.

However, you will experience grace.

One Of These Things...

2010-07-18T17:47:00.004-04:00

Valerie, who wrote the winning CURE Magazine essay and whose blog I follow, sent me a link to a story from an Indianapolis TV station about someone named Greg Frazee. She came across it because she had noticed that folks had logged onto her site while searching my name.

Sorry, wasn't me. I'm older than 45.

Today, I sang in a quartet in church. I was privileged to sing with 3 other folks who are extremely talented.

I was reminded that last year, on this Sunday in July, I met three other folks who are extremely talented. I had met all three of them prior to that day, but I didn't know they were part of a "pack."

I enjoyed them as professionals and as human beings.

One of them replaced my blood soaked bandages after my port was inserted, the other was there in the room when my stem cells were returned to me. She followed through to make sure they were no delays or snags in the process. The third, provided me with Popsicles, which I learned was standard operating procedure, in advance of the stem cell infusion to minimize any side effects I would experience in my mouth due to the infusion. On the day I was released, she trimmed my hair (what was left of it) so I wouldn't look like a freak with a bad haircut.

On the day that I "met" them as a group, they gathered forces to critique my pajama bottom and shirt coordination. They executed a drawing of the patterns I was wearing that day and wrote the words, "Call the fashion police" on the drawing and then taped it to my hospital room door.

From then on, when I knew they were on duty, I would wear the most mismatched ensemble that I could. It accomplished several things. It guaranteed a visit from them even if they weren't my assigned nurse that day, it made them laugh, and it took the edge off of my stay.

"Laughter is the closest thing to the grace of God." - Source unknown

Well, Here It Is

2010-07-16T06:48:00.009-04:00

The one year "anniversary" of the day I was admitted to MCV to finish off the alien.

I'm "celebrating" by doing something today that I couldn't do last year. As I write this, I'm in Laurel MD preparing to meet with clients in the DC area and then will head home to Richmond this afternoon. Heck, I even got to "enjoy" sitting in DC Beltway traffic last night during rush hour. I didn't really enjoy it, but it didn't make me crazy. I didn't even notice that anyone else on the beltway was particularly annoyed by it. I did manage to receive a "blessing" from someone following me through a traffic circle near where I stayed overnight last night. Guess they didn't like the way in which I entered the circle. I waved back at them (with all 4 fingers upraised - telling you that so you know I wasn't rude in my reply).

If it were raining (or snowing) today, I could disassociate today from last year. However, the weather is similar. I'm not mopey or anything about today. Just cognizant that it's "that day." Next Friday is the one year date of getting my stem cell "rescue." We'll see how that goes.

The thing that gets my attention is that from this time last year until early January of this year, my comings and goings were at the mercy of treatment and after effects. That was a long time. It is in the past now, but as I told someone after I went through a 6 month period of unemployment over 18 years ago, "A 6 month unemployment period does not mean you recover from it in 6 months." It takes awhile to recover. I sit here and notice my peripheral neuropathy (which is most likely permanent - but nothing more than a numbness in my toes), and realize I have a permanent souvenir from my treatments.

I celebrate that my most recent blood counts are all normal, except for the platelet counts which are still below the normal range, but are at a level that if I needed surgery, I could proceed without concern.

I celebrate that some internal aches and funkiness I was noticing recently, and were similar in feeling to some of the same physical funkiness I was feeling prior to being diagnosed, have not been apparent the past few days.

I celebrate that I have a new follower on my blog who is a complete stranger to me. She has an amazing blog of her own that is very candid and very insightful as she deals with Chronic Lymphocytic Leukemia.

I celebrate all of the followers of my blog and their amazing blogs. Look at my list of blogs I follow and you can check out their blogs.

I celebrate that this Sunday I will be singing in a quartet during both services in church. It will be the first time I've done that since before the alien came to visit.

I celebrate I will be attending another really cool event on Tuesday evening in DC, that as promised, I will share details about on Wednesday.

I celebrate that in August, I will be attending an event hosted by the good folks at MCV that is a "Day of Celebration" that honors the good work they have been doing for over 20 years.

I celebrate that I know I walk through the world with my "holy host of others." I liked that Bill Lohmann captured the comment "At all times, there was this amazing downpour of grace on me," in his article last week.

To celebrate, one has to look in the rear view mirror to see from where they have come. Allow me that and there will be more celebrations.

"I Got That Going For Me"

2010-07-12T18:32:00.002-04:00

Lots of nice things said about the article.

The National Coalition for Cancer Survivorship even linked to it from their home page under the "In The Spotlight" section.

This week, I have a "booster juice" infusion on Wednesday and then Friday is the one year anniversary of being admitted at MCV.

With any luck, this Wednesday could be the last time I ever need to have any sort of infusion in relation to the coming of the alien.

But....there is something pretty cool on the horizon next Tuesday evening in Washington DC. I'll tell you about it next Wednesday.

Until then, may you walk well.

"Roll The Rug Up. It's Today"*

2010-07-09T03:17:00.004-04:00

An article, written by Bill Lohmann, is in today's edition of The Richmond Times Dispatch.

Their newsstand sales may spike a little bit today just from my own efforts, I'm thinking.

Yes, I did post this entry shortly after 3AM this morning, well, because I was curious.

I am very pleased with the article and he related alot from the "blah, blah, blah" that I fed him when we met. I was hoping that he would capture the fact that no matter the diagnosis, there is hope because you will be surrounded by amazing folks. Some that you know and some that you will meet along the way. If you have ever had any personal contact with me, you are as much a part of this article as myself.

If I've never met you, but you have been a caregiver for a person diagnosed with a catastrophic illness, the article is also about you.

I told him that I can recall everything that was done for me and everyone that shared(and continue to share) in my journey. Those stories perk me up when I need perking up and make me shake my head and say, "Wow!"

"Go into the world in peace. Be of good courage; hold fast that which is good; render to no one evil for evil; strengthen the faint-hearted; support the weak; help the afflicted; honor all people."

*Jerry Herman

Nothin Yet

2010-07-08T07:23:00.005-04:00

Probably sometime next week, I'm thinking.

I sent a note yesterday to the folks at the MCV Apheresis lab wishing them a Happy Anniversary. Yesterday was the one year anniversary of our meeting when they started the process of collecting my stem cells. I thanked them for their contribution in continuing my life.

For fun, I want to share with you what I said to the "Team In Training" folks the other day.

"After one of my chemotherapy treatments, I was standing in the treatment room talking to another patient. One of the nurses came up to me and said, 'I know you are on your way out and I am about to step away from the room for a little while. I wanted to catch up with you before you left and say goodbye until next time.' She then proceeded to give me a hug which I 'begrudgingly' accepted. I looked at the patient I was talking to and said, 'Had I known life was going to be this good, I would have done this cancer thing a long time ago.'

Throughout my cancer treatment experience, I have met some fantastic folks, was absolutely spoiled by friends and family, and experienced some things I never could have imagined. And now, I stand here in front of a whole new group of people who I have never met until today and I am looking at folks who are unselfishly committed to making the lives of others better through their individual efforts.

I thank you for what you do. Had I known...."

Not Yet, But I've Been Busy

2010-06-30T21:03:00.008-04:00

This isn't the news I'm busting to tell you, but I think it's pretty cool, nonetheless.

I recently was invited to write a guest blog for the National Coalition for Cancer Survivorship. They asked, I was flattered. I wrote. They posted it. Look closely on the home page of their website and you will see my name under the "In The Spotlight" section. Crazy.

I was telling one of my brothers the other day that had you told me, when I was diagnosed, all the cool things that would happen to me and all of the amazing people I would meet, I would have shaken my head at you. The crazy thing is, I think there is more to come.

As long as the guy running the rides lets me stay on the ride, I'll ride until one of us gets sick of it.

Started working tonight on my next literary effort (Those of you who know me really well, know I have a bunch of them that I haven't finished). It's a fictional work. I've been pondering this one and struggling with its construction. However, new ideas and concepts are coming along every day and some of my "concept previewers" like it. I'm even finding myself coming up with some pretty cool literary devices to use in it. Where that's coming from, I have no idea.

I think I do, but I'll finish it first and then see what you think.

"Oh The Things I've Done, In Fact Each And Every One.."

2010-06-29T18:39:00.002-04:00

I'm bustin' to tell you some news about the news, but I'll hold off. It's all good stuff and kind of exciting. When it happens, I'll will post it right away.

However, I did hear some news today that is kind of cool. Bo is scheduled to be a big brother somewhere around January 20. How great is that for him and his family?!?!?!

I signed up as a volunteer for the local chapter of the Leukemia and Lymphoma Society. One of the first activities I will do with them is speak as a patient who has benefited from their efforts. The event is a training session for their "Team In Training" activity. After I speak to them, I will join them in a 6 mile training walk. That happens this Saturday (July 3). Last year on July 3, I was going to MCV to receive my first injection to move my stem cells out of my bone marrow.

What a difference a year makes!

Title Credit: "I Am Waitin For The Light To Shine" - Roger Miller

Rest

2010-06-23T06:00:00.000-04:00

The statement below is from a Caring Bridge Journal I have been following about an 8 year old girl in Charlotte NC, named Ellie Potvin. The link to the journal can be found by clicking on Ellie's' name in the statement. It is not an easy journal to read in some places, but it is sacred and holy. I admire Ellie's' courage and the courage of her family to allow us into their lives through their journal.

"Ellie gained her angel wings at 11:35am and rest in my arms."

"I will also rejoice in Jerusalem and be glad in My people; And there will no longer be heard in her the voice of weeping and the sound of crying."

Straight From The....

2010-06-22T16:37:00.014-04:00

The finalist essays are up on the CURE website. Note: If you want to pass on the essays to others, feel free to do so. However, don't copy and paste them into an e-mail. Rather, pass on the link to the web page. Hopefully by now, you've read the one that Valerie wrote. The one that Catherine wrote is a pretty neat story too.

I speak for myself, but what I think those of us (including all the others that were submitted and those who could have submitted an essay) who wrote the essays want you to know is that the journey through cancer is not one you take alone. You don't have to.

I told one of the other nurses that I encountered in the process, "You know, it (the essay) was written about an individual, but I feel that way about all the nurses I encountered in the process. There is no way any healing could have occured without their involvement. Know that YOU are one of those 'special stories' I tell others."

Her reply was, "Thanks Greg, I can speak only for myself in telling you that I am the one who is so blessed with the people I have the opportunity to work with, and if anything I do makes this process a little easier then I have done my job well and there is deep reward in that."

I told you so.

Hot Off The Wire!

2010-06-21T17:31:00.008-04:00

Here is the link to the winning essay from the Extraordinary Healer Event that CURE Magazine sponsored.

I heard it read in person, and it was powerful. Reading it is also powerful. As I read it, I thought to myself, "I got to meet both of these people!" Great ladies.

Valerie, who wrote the essay, reads this blog, so I invite you to post your comments to her on this blog after you read it. This is the link to her blog.

CURE is going to post the other two essays, but they are not up quite yet. As soon as they are, I will let you know.

Here's another note from today. I was having a few minutes of stress earlier today and not long after that, I got the following message from Bo's mother.

"Hey, on Friday morning, as I drove Bo to summer camp, he says, “Mom, do you have Mr. Greg’s phone number?” I said, “Yes, why?”. He said, “I want to call and invite him to come over and play. He’s a lot of fun.” I explained that you lived in Virginia and it was several hours away so you couldn’t just pop over and play anytime you wanted to. He was disappointed but I told him that maybe we could go and visit you some time. He’s a big fan of yours now!"

Needless to say, I'm a big fan of his.

I Love A Parade

2010-06-20T19:24:00.001-04:00

Parade Magazine published a feature today on "Cancer In America." I invite you to check out the online content because there are some articles and features that did not appear in the printed version.

I especially appreciated the "Living After Cancer" article. I invite you to check it out also. Some of the things in that article rang true with me and are happening with me right now. Namely, the fatigue and neuropathy related stuff (not severe cramping, but I do get cramping sometimes when I am in bed). When I read that, frankly I was relieved to read that some of that stuff is normal. Whew.

Being a single guy, there are some cryogenic things going on in my freezer. Today, I opened a bowl that I had in there, but had forgotten what it was. It was some pasta that I made before I went into the hospital last summer. It was like stepping into a time machine and whisking back to last summer. I can tell you that all cryogenic things related to that time frame are now out of my house and in the super container (that's what we call the big, city supplied, trash cans in Richmond VA). Yet, another exorcism.

Hang with me the next month or so as I exorcise those demons. The end of July starts the next round of scans, tests, bone marrow biopsy, etc. I meet with my doctor on August 10 for her assessment of the information. In that time frame, there is some potentially cool stuff that could happen and I will fill you in on when/if it does.

"It is for us to pray not for tasks equal to our powers, but for powers equal to our tasks, to go forward with a great desire forever beating at the door of our hearts as we travel toward our distant goal."-Helen Keller

Bo - Part 2

2010-06-18T06:00:00.002-04:00

Indulge me. I didn't say enough about what it was like to meet Bo on Sunday. After you finish reading, you'll see why he's one of my role models.

I called his parents as I was on my way to them to let them know what time I would be arriving. His mother replied, "OK, we'll be waiting on the porch for you." I have to admit, I was a bit nervous about meeting Bo, since he was a total stranger, and as kids can be honest, there was no rule about him having to like me.

When I pulled up in front of their house, there he was, sitting on the porch, working in one of his coloring books. His parents asked him why he insisted on sitting on the porch and he replied, "We told him we'd be waiting on the porch when he got here." When I arrived, he waved at me and went inside to tell his parents I was there.

We went inside and started to chat. Bo is a very polite young man. He hung right in there listening to adults talk. At one point, he walked over to his mother and whispered something in her ear. She replied, "Ask him." He came over to me and asked, "Would you like to play Wii with me?" How cool was that!? I already was surrounded by North Carolina hospitality and Bo added another layer. You've seen the Wii picture. I had a big time.

I feel he and I have a bond. I regret the reason we have a bond, but I will never regret the power of that bond.

I remember walking into the chemo room the first day and not wanting to interact with any of the other patients. I had my cancer and they had theirs. There was no reason to share. We all had our own loads to carry and, frankly, I didn't want to carry anyone else's and they didn't need to carry mine. I was wrong.

If you'll be my bodyguard
I can be your long lost pal
I can call you Betty
And Betty when you call me
You can call me Al - Paul Simon

Don't Mind If You Do

2010-06-17T06:17:00.003-04:00

A general observation I have of myself and others is that if we are experiencing some discomfort or pain during our medical experiences, we try to "tough it out." We self diagnose and assume that our discomfort is a result of our diagnosis and treatment and "this too, shall pass."

My advice (and it pains me to use the word), is to raise the flag immediately to your caregivers. Do it nicely, but don't be ashamed. They want to know if you are uncomfortable and they are well trained enough to know how to provide relief to you. If they can't they will tell you so. Most of the time, they CAN help you.

As I have said countless times before, my assessment is that people in the medical profession are there because of their compassion towards humanity. They want to help ease pain and discomfort. They want to make their jobs obsolete.

Talking to them helps them live their dream.

Stuff To Think About

2010-06-16T06:00:00.000-04:00

What's your take on this?

A related article.

And then this happened one month to the day we were out there. I never even considered the possibility while we were out there.

Some 'Splainin

2010-06-15T06:00:00.000-04:00

I was talking to a friend about the next IVIG infusion (scheduled for this Wednesday). He was wondering if the chemo that I had last year was no longer in my body, why is my body still being affected by it.

I explained that it's like being in a boxing match. Even though the match only lasts 15 rounds, the body can still have pain and wounds from the match for some time.

The blood counts are still reacting to last year's chemo. The fight is over, but the side effects are still there to some degree. I'm a lucky guy. I've recovered well, but there are still some things that aren't quite perfect. Some side effects and reactions can take up to two years to completely go away. Some don't go away at all. The neuropathy in my toes is most likely permanent. If that's the worst thing that will be left over, I'm doing OK.

Even more good news about the whole process is that the monitoring of immunoglobulins was not a standard procedure in the past. It is now. That's a good thing and is a result of the continuing momentum of cancer research.

Speaking of left overs, I was sent home from a trip to North Carolina with some barbecue (and I'm not sharing it). I told my friends that if North Carolina ever wanted to secede from the United States, I would oppose it solely to save the barbecue (the good kind - from Eastern North Carolina). I'm looking forward to an omelet of my creation. Fill the center of it with barbecue and cheese. Excellent!

Celebrity Sighting

2010-06-14T06:21:00.003-04:00

I was in North Carolina over the weekend and made a visit to Bo and his parents. I've always been his fan, but when he invited me to play Wii with him, I became a solid fan. And yes, he did "educate" me in the skills of playing Wii.

As you can see he looks great and it was an honor to meet him. He inspired (and continues to inspire) me to move ahead and enjoy the current days and the days ahead.

In addition, I walked in the Triangle Susan Komen event in Raleigh on Saturday. Another good friend who helped guide me through my fun is a 5 year survivor of breast cancer. It was great to walk in the event in her honor. They had a 25,000 people walk/run and they raised over $1.2 million

My Ears Perked Up

2010-06-06T12:44:00.003-04:00

Heard this on the "Today Show" this morning. Pretty amazing stuff.

Today is National Cancer Survivors Day. I'm going to an event nearby. Wanted to go last year, but couldn't. It will be interesting to mingle with survivors.

Some of last summer's ghosts are coming to visit. It was about this time last year that I was wrapping up treatment with my oncologist and was moving into the MCV phase. We've come a long way baby!

No One Can Love This More Than Me

2010-06-05T05:53:00.002-04:00

Got a package in the mail on Thursday. It came from my favorite artist. The picture is of what was in the package. Now, it's my favorite mug made by my favorite artist.

She is a friend of my Nurse Practitioner. She lives in San Jose and flew down to San Diego the other week to hang out with us. The two of them hadn't seen each other in 4 years and they got to spend some time together. How cool was that!

This news cracks me up. I may have posted it before, but I searched my blog and didn't see that I had. If I have, I apologize, but it's great stuff. I do see humor in it, however, it's an amazing example of what is going on in the medical research community. My senses are heightened to this kind of thing and I am amazed and pleased when I hear it. Plus, if this becomes reality, I'M A GOLD MINE!

"Somewhere, something incredible is waiting to be known." Dr. Carl Sagan

My Mistake (And Rant) - Part 2

2010-06-01T06:00:00.005-04:00

I realized after my previous post that it could discourage someone from seeking treatment if they are not feeling well. I mean, if there is all this other effort required, other than focusing on getting well, then who wants to deal with it?

You. You have to.

In jest, I've made the comment that I would have been willing to consider a "cash option" instead of treatment. Say, 80% of the dollar value of what has been paid to date to buy some drugs to eliminate the discomfort of the illness and then spend the rest on going out with a bang.

However, I think I may have a little more fun getting under the skin of those who need to get a little education in the process. By doing so, some junk gets cleared out of the way for future patients. Trust me, the letters I sent to the insurance company and the lab contained some spunk and also some frank language. I wrote them yesterday. I reviewed them today. I think they are good stuff.

I found some notes yesterday today that I took during a phone conversation that I had last year with a former stem cell transplant patient. His courage in talking to me about his process gave me the final push I needed to decide to go with the treatment.

I live in a world where I think the whole thing can get easier. I've met people on the treatment administration side of this that say they hope by the time they retire, their jobs won't be necessary. If they had decided on an easier road when they were making career decisions, who knows where cancer research would be right now?

As a patient, we can make the same decision. The effort and work we go through now, during and after our treatments, clears the way for future patients. To those who came before me, I thank you. To those with courage in the future, I thank you.

As a patient, the only thing you have to focus on is getting well. If you encounter others in the process that want to rob you of that focus, call them out.

I don't think we are here to take up space. The whole exist, die, decay and turn into fossil fuels thing doesn't carry much weight with me. Especially not now.

"..There will be no more death or mourning or crying or pain, for the old order of things has passed away..."

Calling Them Out (Part 1)

2010-05-31T16:00:00.007-04:00

Won't name names, but.....

This is the first of a 2 part rant. In this post, I rant. In the next post, I share with you how to face the issue head on and how to get you well and keep you well.

On November 4, 2008 I received a bone marrow biopsy. The sample was sent to a lab in California that is out of the network of the insurance company. They paid the claim at an agreed upon amount and I heard nothing more about it. If the lab had felt that the amount was below their minimum acceptable level of payment, I would have received a statement from them requesting additional money. I didn't. I had another bone marrow biopsy last March. Same deal.

The latest biopsy yielded an explanation of benefits letter from the insurance company stating that since the lab used by my doctor's office was out of the network (it was the same lab that they have used for the previous biopsies), I would be responsible for the entire amount the lab charged. The amount the lab charged was 3 times the amount they settled for in November 2008.

I am assembling all of the previous statements and mailing them to the lab and the insurance company to remind them of how they settled in the past. I hate having to do this. I don't feel I should have to. If your response is, "I understand," I thank you for that. If your response is, "Well, that's what you have to do," I really don't want to wish this upon you, but I didn't choose to have cancer, and I hope it never chooses you. If you haven't walked through a major illness, then keep your opinion to yourself. The main responsibility of the patient is to focus on recovering. Premiums are paid not only for payment of claims, but for the service that should accompany the payments.

I do not believe insurance companies or labs are evil. I like what they do. I will name Jim and JoAnn at the insurance company as two people with whom I interacted that were absolutely amazing. I miss talking to them.

Interesting fact: My doctor's office and the folks at MCV are the only caregivers that have sent me completely itemized statements (without request) during the entire process.

As I have said before, I don't know enough about any of the health plans being discussed in Congress. However, the system is broken.

The Founding Fathers agreed and acted upon a broken system.

Slideshow Of CURE Magazine Event

2010-05-28T06:46:00.004-04:00

Here is a link to photos of the event.

Towards the end of the pictures, there is a photo of a nurse in a pink top. She is also one of the nurses at the clinic. She administered my IVIG infusion last week.

More details and copies of the essays will be posted on the CURE site in a couple of weeks.

You know I'll let you know when it's up.